ethical principles: guidelines for hospice and palliative care clinical ...

ETHICAL PRINCIPLES: GUIDELINES FOR HOSPICE AND PALLIATIVE CARE

CLINICAL AND ORGANIZATIONAL CONDUCT*

PROFESSIONAL DEVELOPMENT AND RESOURCE SERIES

*Formerly published as “Vital Bonds” by NHPCO, 2001

Ethical Principles: Guidelines for Hospice and Palliative Care Clinical and Organizational Conduct

HOSPICE AND PALLIATIVE CARE PREAMBLE

Considered to be the model for quality, compassionate care for people facing a life-

limiting illness or injury, hospice and palliative care services provide a team-oriented

approach to expert medical care, pain management, and emotional and spiritual

support expressly tailored to the patient's needs and wishes. These services are

delivered with sensitivity to the fact that, as hospice and palliative professionals, we

have entered into people’s lives and affairs during a period of heightened need and

potential vulnerability.

Through its work in supporting providers and professionals and offering education

to the public, the National Hospice and Palliative Care Organization serves as an

advocate for patients facing the end of life and their families. Through its

standards, policies and procedures, NHPCO seeks to promote an ethical corporate

culture among its members, involving both internal and external relationships.

NHPCO encourages all its members to provide services which are grounded in

fundamental ethical principles of healthcare. These principles include Autonomy,

Beneficence, Nonmaleficence, and Justice. In addition to these four, Conscientious

Objection is a highly held principle, encouraging people to speak up when a

situation or circumstance is contrary to their beliefs.

The National Hospice and Palliative Care Organization offers this Hospice and

Palliative Care Code of Ethics as a guideline to hospice and palliative care

programs and professionals to assist them in assuring that hospice and palliative

care throughout the country is provided in accordance with the highest standards

of ethical behavior.

Recognizing that situations do and will arise when ethical principles conflict,

the National Hospice and Palliative Care Organization recommends that

every hospice and palliative care program have a process and format in place

to deal with situations arising from these conflicts.

INTRODUCTION............................................................................................1

HOW TO USE THESE PRINCIPLES AND GUIDELINES ......................................4

NHPCO’S ETHICAL PRINCIPLES (Overview) ..............................................6

PRINCIPLES AND GUIDELINES

Access ................................................................................................8

Admissions ......................................................................................10

Care and Services ............................................................................12

Conflicts of Interest ..........................................................................14

Development and Fundraising ..........................................................17

Discontinuation of Care ..................................................................19

Employee and Volunteer Relations ....................................................21

External Collegial Relationships........................................................23

Governance ......................................................................................25

Information Management, Confidentiality and Privacy ....................27

Marketing and Referrals....................................................................29

Public Information ..........................................................................31

Research ..........................................................................................33

GLOSSARY OF KEY TERMS ..........................................................................35

2006 ETHICS COMMITTEE ........................................................................37

NHPCO LEADERSHIP TEAM......................................................................38

RESOURCES ................................................................................................39

NHPCOTABLE OF CONTENTS


ETHICAL PRINCIPLES:GUIDELINES FOR HOSPICE AND PALLIATIVE CARE

CLINICAL AND ORGANIZATIONAL CONDUCT*

1Ethical Principles: Guidelines for Hospice and Palliative Care Clinical and Organizational Conduct

INTRODUCTION

The National Hospice and Palliative Care Organization (NHPCO) advances

the philosophy and practice of hospice and palliative care with the goal of

profoundly enhancing quality of life for people dying in America and their

loved ones. NHPCO serves as a voice and resource for its members and the

field of hospice and palliative care.

NHPCO envisions a world where individuals and families facing serious illness,

death, and grief will experience the best that humankind can offer. Our mission

is to lead and mobilize social change for improved care at the end of life.

THOSE SEEKING TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE NEARING THE END

OF LIFE MUST ASSUME THE RESPONSIBILITY OF GREAT TRUST. THIS RESPONSIBILITY

GOES BEYOND LEGAL OR BUSINESS OBLIGATIONS. IT IS A CRUCIAL RELATIONSHIP

THAT MUST BE WELL TENDED AND NOURISHED. IN FACT, THE PATIENT AND FAMILY

ARE, AND MUST BE, THE CENTER AROUND WHICH EVERY CONVERSATION,DECISION, AND ACTION OF THE ORGANIZATION REVOLVES.

NHPCO believes it is crucial to establish ethical guidelines that will help assessour accountability to the individuals and the communities we serve. Thoughcommon sense is foundational, it is not sufficient in providing guidance tohospice and palliative care professionals as they navigate the complex and oftenconfusing waters of the hospice and palliative care field.

An organization with clearly articulated ethical principles, and a thoroughcommitment to those principles, is better positioned to respond moreeffectively in times of crisis and change than one without such guidelines.

These guidelines build upon the previous policies and guidelines that NHPCO hasdeveloped (see Resources section in the Appendix). While these documents providedirection, the current business environment in healthcare and the world ingeneral, has created the need for additional attention to ethical and transparentbusiness, clinical, and organizational practices.

© Copyright 2006 National Hospice and Palliative Care Organization

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The rapidly changing healthcare environmentand the ever-increasing pressures on healthcareproviders often lead to a feeling of uncertaintyregarding “the right thing to do.” Fundamentalpolitical shifts, emergence of managed care, increasingcompetition, consolidation, downsizing in the generalhealthcare arena, technological advances, potential workforce shortages, andan atmosphere of intense government, media, community, and citizenscrutiny have led to a situation in which new and difficult legal and ethicalissues are regularly presenting hospice and palliative care leaders with difficultbusiness and organizational decisions.

While the issues above play an important role in healthcare, hospice and palliativecare organizations, many of the overwhelming ethical issues do not have abusiness or legal orientation, but are intimate,profoundly personal life and death situationsinvolving relationships between end-of-life careprofessionals and those for whom they areproviding care. These relationships and themanner in which they are handled are critical togaining and keeping the trust of the patient,family and the public, which is the essentialbasis for the work of hospice and palliative care.

An increased awareness of individual and organizational ethics can build aculture that celebrates trust — a culture that is also compliant with laws andregulations. It also encourages a commitment to a sustained ethicalenvironment that can be a direct force in heightening the excellence,efficiency, productivity, and morale of any healthcare organization.

In hospice and palliative care, our touchstone should extend beyond legalitiesand bioethics to provide enduring support — guiding us through constantbusiness, organizational and regulatory changes, internal and externalpressures, and the sensitive nature of our work.


Not only are we held accountable for our own actions, but we are also judgedby the conduct of our peers — those who operate in the same field.

As such, it is essential that all hospice andpalliative care organizations operate in acaring, ethical, and trustworthy manner inall facets of their clinical and businessactivities, seeking to uphold the highestlevels of conduct. A strong organizationalethic helps to facilitate conversationsbetween professional groups both within andoutside of a hospice and palliative careorganization.

NHPCO is committed to working with hospice and palliative care organiza-tions to ensure these principles and guidelines are effectively understood andimplemented in programs across the country. We believe they will helphospice and palliative care providers foster the highest possible ethicalstandards in serving the needs of their patients, their families and theircommunities.

INTRODUCTION, CONT.


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HOW TO USE THESE PRINCIPLES AND GUIDELINES

There are a variety of ways in which these Principles and Guidelinescan be used by the hospice and palliative care community. They canprovide guidance at two different — but intersecting — levels:

� at the organizational level — both internally and externally;

� at state and national levels.

At the same time, however, these principles and guidelines areintended to be a living and vibrant set of guidelines for each organiza-tion and should be viewed as a roadmap for ongoing assessment andimplementation of necessary changes. They are designed to beadapted, customized, and modified according to the unique character-istics of each hospice and palliative care organization. Note thatregardless of the organization’s proprietary status, tax status or religiousorientation, Board members, employees and volunteers are not exemptfrom inducement issues or other ethical and compliance concerns thatare described in this document.

Each topic includes a Principle, its Intent, Guidelines for followingthe Principle, and Examples of actions or situations related to theprinciple that have been designated as “Optimal” or “NotRecommended”.

NHPCO hopes that the information provided will assist in decision-making that cultivates and deepens the trust placed in hospice andpalliative care organizations.

Given its nature, this document should not be viewed as establish-ing standards of conduct or practice generally applicable to hospiceor palliative care organizations, and its contents are not intendedto be used by others for legal, regulatory or enforcement purposes.


Guidance at the Organizational Level

Internally

These Principles and Guidelines have been designated as an educational tool for allthe individuals who comprise the organization — leadership, staff, and volunteers.They should be helpful in creating governing body and employee meetings anddiscussions concerning organizational ethics issues, more formal educationalsessions, and policy formation and review. In addition, they can be used as abenchmark against which to gauge overall clinical and organizational ethics efforts.

The Principles and Guidelines will also help to develop an organizationalstructure and culture that meets both voluntary and mandatory standardspromulgated by other institutions. Two increasingly common approaches areto develop a separate organizational ethics committee or to charge an existingethics committee with organizational ethics issues.

Externally

The Principles and Guidelines are an excellent source of information foreducating members of the community who come into contact with or cansupport the organization. They also offer a framework for relationships withother healthcare providers in the community — be they local, regional, state-wide or as part of a network. Hospice and palliative care organizations havemuch to learn from one other, and a sharing of best practices, policies,successes — and even failures — in the clinical and organizational ethics areawill help fulfill organizational missions in a more complete way.

Guidance at State and National Levels

The Principles and Guidelines provide a helpful means through which theoverall hospice and palliative care industry can actively ensure organization-al standards meet the high standards the public expects. They can be used bystate and national hospice and palliative care organizations to facilitate theirefforts and further the trust relationships with other entities.

These Principles and Guidelines also will aid hospice and palliative care organ-izations — at all levels — to maintain an industry and regulatory environmentwhich strengthens the trust placed in them by their stakeholders and enablethem to offer services to everyone who is in need of hospice and palliative care.

HOW TO USE THESE PRINCIPLES AND GUIDELINES, CONT.


THE NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION’S

ETHICAL PRINCIPLES Members of the National Hospice and Palliative Care Organization

should subscribe to and practice the following principles.

INTERNAL RELATIONS

A. Patient and Family

AdmissionsOffer access to hospice and palliative care to all patients andtheir families in need of those services.

Care and ServicesProvide patients and their families with the highest possiblelevel of quality end-of-life care and services, while maintainingprofessional boundaries that respect their rights and privacy.

Conflicts of InterestAvoid activities that conflict with the organization’s responsi-bilities to patients and their families.

Discontinuation of CareDiscontinue care only upon the voluntary consent of the patient,when the patients is no longer medically eligible, or when theorganization cannot provide care without compromising theethical or professional integrity, or the safety, of its employees.

Information Management, Confidentiality and PrivacyRespect and protect confidential information.

B. Employees and Volunteers

Employee and Volunteer RelationsEnsure that hospice and palliative care employees andvolunteers are treated with respect and fairness, whilesupporting their ability to obtain the highest level of skill and expertise in their profession or role.

C. Governance

GovernanceAdhere to governance structures that ensure the organizationfulfills its mission and purpose.

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EXTERNAL RELATIONS

A. Hospice Market (other hospices, suppliers, payers)

External Collegial RelationshipsWork cooperatively with other healthcare providers, suppliers and payers to provide compassionate and competent end-of-life care.

B. Donors

Development and FundraisingBe open and transparent in soliciting and accepting financial and/or in-kind support.

C. General Public

AccessPromote universal availability of comprehensive hospice andpalliative care services, in diverse healthcare settings and withspecific emphasis on reaching traditionally underserved populations.

Marketing and ReferralsFollow marketing and referral practices that promote compassion-ate, high-quality care for patients and their families.

Public InformationDevelop and disseminate accurate, honest and timely information about hospice, palliative care and other end-of-life issues to local, state and national communities.

D. Society

ResearchSupport the advancement of knowledge to improve the provision,quality, and outcomes of hospice and palliative care.

THE NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION’S

ETHICAL PRINCIPLES Members of the National Hospice and Palliative Care Organization

should subscribe to and practice the following principles.

Note: Due to the overlapping nature of external and internal relations, and toenable easier use of this document the following “Principles and Guidelines”

are listed alphabetically by topic.


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ACCESS

Principle

Promote universal availability of comprehensive hospice and palliative care services, in diverse healthcare settings and with specific emphasis

on reaching traditionally underserved populations.

Intent

To expand the numbers and types of patients and their families who receivehospice and palliative care services; to reach out to patients with any life-limiting illnesses; to reach out to ethnic and minority communities whichhave not traditionally accessed hospice and palliative care; and to take stepsto remove barriers to hospice and palliative care referral and admissions,despite financial risks and social challenges.

Guidelines

1. Review and eliminate practice patterns and organizationalprocedures that might impede or restrict access.

2. Provide access to care as broadly as possible within reasonable orga-nizational constraints.

3. Offer respectful services to patients and families with diverse ethnic,cultural, and religious beliefs and attitudes toward death and dying.

4. Foster an organizational climate which is inclusive and appreciativeof patients’ ethnic, cultural, religious, spiritual, economic andlifestyle diversity.

5. Project a welcoming message and image to diverse members of thecommunity.

6. Remain current on research and national standards for palliativetreatment of chronic, progressive and degenerative diseases.

7. Work with local physicians and community groups to inform thepublic about what services are offered by local hospice andpalliative care programs.

8. Employ and train adequate numbers of staff and volunteers to carefor patients of all ages and with a wide range of life-limitingdiseases and conditions.



Guidelines, cont.

9. Collaborate with other providers for continuity of care as patientstransition among providers and treatment approaches.

10. Commit to serve underserved patients to the extent possible,despite financial risks and social challenges.

Examples

Optimal� Develop and communicate a plan of care that specifies the number

of team visits and other services, according to patient/family needs,situations and available resources.

� Commit to providing access to all in the community in equitablenumbers through responsible budgeting, fund-raising, and financialplanning, with the governing body holding managers accountablefor access and case mix goals.

� Communicate regularly with physicians through visits, mailings,newsletters, managed care networks, Web sites, and e-mail.

� Communicate with the media to clarify principles of quality end-of-lifecare, as well as clinical and financial aspects of hospice and palliativecare, including those pertaining to the physician-patient relationship.

� Offer resources to healthcare professionals that foster better commu-nication about hospice and palliative care with their patients.

Not Recommended� Limit home health aide visits, social work visits or other services by

rigid formulas, without consideration of patient needs and wishes.

� Restrict admissions for patients with non-cancer diagnoses.

� Restrict admissions for patients requiring expensive treatments.

� Oppose the creation of new hospice and palliative care programs inthe area simply to protect business interests, if the current hospiceand palliative care capacity is inadequate to meet patient demandand need.


ACCESS, CONT.

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ADMISSIONS

Principle

Offer access to hospice and palliative care to all patients and their families in need of those services.

Intent

To respond adequately and quickly in admitting patients that are medicallyeligible for hospice and palliative care and to conduct admissions consistentwith patients’ and families’ best interests.

Guidelines

1. Admit all eligible patients, regardless of their ability to pay.

2. Ascertain and honor the wishes, concerns, priorities, and values of the patients and their families consistent with the law and the organization’s policies.

3. Support, affirm, and empower families as caregivers.

4. Consistently apply non-discriminatory admissions policies.

5. Admit patients in a timely manner, regardless of time of day or day of the week.

6. Refer to another provider when unable to adequately serve a patient.

7. Give patients and families accurate and easily understoodinformation sufficient for truly informed consent.

8. Inform patients of their rights and responsibilities.

9. Assess community end-of-life needs and evaluate the organization’sability and success at meeting them.

10. As appropriate, adapt services to evolving community needs.

11. Accept eligible patients transferred from another hospice orpalliative care program.


Examples

Optimal� Admit a patient who has exhausted all possible sources of funding

for their care.

� Offer reasonable security to personnel serving high crime areas.

� Provide admission services on Saturdays, Sundays, evenings andholidays as appropriate.

� Accept patients who are receiving radiation or other high costtreatments, when the patient is otherwise eligible to receive hospiceor palliative care services.

Not Recommended� Delay in admitting a patient when another

hospice and/or palliative care provider isavailable to admit the patient immediately.

� Delay a patient’s admission until the patientcompletes a course of palliative radiationand/or chemotherapy consistent with the organization’s treatment protocols for admitted patients.


ADMISSIONS, CONT.


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CARE AND SERVICES

Principle

Provide patients and their families with the highest possible level of quality end-of-life care and services, while maintaining professional

boundaries that respect their rights and privacy.

Intent

To ensure that patients and families receive the best possible care, regardless oftheir ability to pay, age, ethnicity, cultural and religious beliefs, social status, sexualorientation, attitudes toward death and dying, end-of-life disease, or condition.

Guidelines

1. Ensure that care and services are not diluted or diminished basedon the patient’s ability to pay.

2. Employ and train adequate numbers of staff to care for patientsregardless of age or end-of-life diseases and conditions.

3. Collaborate with other providers for continuity of care as patientstransition between levels of care.

4. Ascertain and honor the wishes, preferences, concerns, prioritiesand values of the patients and their families consistent with the law and the organization’s values and policies.

5. Support, affirm and empower families as caregivers.

6. Consult experts when providing care to patients with conditionsthe staff has less experience in treating.

7. Give patients and families accurate and easily understoodinformation regarding their condition and treatments.

8. Fully disclose information to patients and families regarding cost,services, and complaint policies, as well as any policies regardingdiscontinuation of hospice services.

9. Assume the responsibility to keep relationships with patients andfamilies, and the bereaved after the death of a patient, on a profession-al level and maintain professional standards and boundaries.

10. Respect patient privacy and personal boundaries and do not enterinto the patient’s family life and affairs any further than is requiredto meet the goals of the care plan.

CARE AND SERVICES, CONT.


Examples

Optimal� Upon admission, review the services provided and associated

costs to the patient.

� Ensure all members of the interdisciplinary team assess the patient within timelines required by the organization’s policies,with follow-up visits according to the plan of care.

� Respect cultural, ethnic, and religious beliefs of the patient and family.

Not Recommended

� Limit the type of medical equipment provided to a patient with no funding.

� Disregard the responsibility of maintaining professional boundariesby developing personal relationships with the patient and/or family.

� Discuss changes in care with family members without including the patient, when the patient is aware and able to make his/herown decisions.

� Accept a gift of higher value than is allowed by the organization’spolicies. The policies should address any exceptions to the rules.

� Impose beliefs or values of a member of the hospice or palliativecare team on the patient and/or family.



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CONFLICTS OF INTEREST

Principle

Avoid activities that conflict with the organization’s responsibilities topatients and their families.

Intent

To uphold the fiduciary responsibility of the organization to protect the bestinterests of patients and families and the organization, without exploitingrelationships with individuals, other organizations, or the community-at-large. This is accomplished by prohibiting conflict of interest or theappearance of conflict of interest and protecting vulnerable individuals fromabuse of power motivated by personal or financial gain. This principle alsoserves to sustain and promote truth and trust in relationships that areessential to the provision of quality hospice and palliative care.

Guidelines

1. Ensure that hospice services are not diluted or diminished forfinancial reasons.

2. Do not use information gained through the course of the relation-ship with a patient or family member for organizational or personalgain or benefit.

3. Ensure that hospice and palliative care employees and volunteersdo not use their position for personal or financial gain.

4. Published policies prohibit solicitation or gifts by employees and/orvolunteers and limit the acceptance of gifts beyond a nominal value,taking into account appropriate cultural and ethnic considerations.The policies should address any exceptions to the rules.

5. Disclose the organization’s gift policy to patients and families at the time of admission.

6. Disclose and address all gifts of a nominal or greater value given at the expressed wish of the patient.

7. Do not give or accept gifts or services of value or monetary compensation in order to receive or make referrals.

8. Make and accept referrals solely in the best interest of the clients.

CONFLICTS OF INTEREST, CONT.


9. Take full responsibility for ensuring that the rights and dignityof patients, bereaved and their family members are respectedand safeguarded.

10. Fully disclose information to patients and families regardingcost, services, and complaint policies, as well as any policiesregarding discontinuation of hospice services.

11. Assume the responsibility to keep relationships with patientsand families, and the bereaved after the death of a patient on aprofessional level and to maintain professional standards andboundaries.

12. Ensure that employees and others who report violations infiduciary obligations and conflicts of interest are protected fromany retaliatory actions by anyone in the organization.

13. Define in writing for employees inappropriate relationships of abusiness, social, professional, romantic, and sexual nature.Clearly articulate sanctions for such violations in hospicepolicies and procedures. Explain processes for registering acomplaint with organization’s management team.

14. Adopt business policies and practices that comply with theAdministration simplification requirements and standards ofthe Health Insurance Portability and Accountability Act (HIPAA)of 1996.

15. Adopt a formal compliance program as a mechanism to preventfraud and abuse, provide for confidential reporting ofcompliance issues without fear of retribution or reprisal,strengthen operational quality, improve the quality of services,and contribute to reducing the cost of healthcare.

16. Have a process and format in place to deal with situationsarising from conflicts based on ethical principles.


CONFLICTS OF INTEREST, CONT.


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Examples

Optimal� Avoid providing hands-on care to non-hospice residents in a

long term care facility except in the case of an emergency.

� Refuse to trade stocks or securities based on “insiderinformation” received from a patient or family member.

� Discuss a patient’s condition only with the patient, designatedfamily member(s), and staff who “need to know” in order toensure the best possible care.

Not Recommended� Solicitation by an employee or volunteer to be remembered

with money in a patient’s will.

� Moonlight (e.g., a hospice team member who is compensatedprivately by the patient/family to provide care for the hospicepatient outside of the hospice plan of care) without the employer’sknowledge and/or to the detriment of the patient or family.

� Make an agreement with a long term care facility to supplementtheir staffing in exchange for referrals.


DEVELOPMENT AND FUNDRAISING

Principle

Be open and transparent in soliciting and accepting financial and/or in-kind support.

Intent

To honor and respect the intimate relationships hospices and palliative careorganizations share with their patients and families and do not takeadvantage of their position and role(s) in soliciting and accepting support; tosafeguard the integral role that they play within their communities.

Guidelines

1. Ensure that public support for hospice and palliative care organiza-tions is truly voluntary and not the result of any undue influence.

2. Comply with the intent of the benefactors and donors supportingthe hospice program.

3. Prohibit employees and volunteers from actively solicitingdonations from patients and families who currently are receiving services.

4. Disclose clearly the sources and use of funds.

5. Make available, upon request, expenses involved in the fundraisingprocess.

6. Publish and distribute, on a regular basis, a report or letter thatincludes critical information in the following areas:

a. the organization’s board and key employee leadership;

b. the vision, mission, and values of the organization;

c. the core governance structure/members of the governing body;

d. the organization’s critical programs and achievements;

e. accurate and timely financial statements; and,

f. a list of donors and their donations, with appropriate“anonymous” citations, in compliance with HIPAA regulations.


DEVELOPMENT AND FUNDRAISING, CONT.


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Examples

Optimal� The organization clearly delineates or discloses its primary

intent or function through the distribution of newsletters andother written materials, and by posting information online.

� The organization has a formal mechanism to account for andreport on donor restricted funds (e.g.: money donated topurchase a specific item was used for that purpose).

Not Recommended� Encourage volunteers to suggest that patients contribute to the

organization’s current fundraising project.

� Provide preferential treatment or care to patients and familieswho are large donors to the organization.


DISCONTINUATION OF CARE

Principle

Discontinue care only upon the voluntary consent of the patient, when the patient is no longer medically eligible, or when the

organization cannot provide care without compromising the ethical or professional integrity, or the safety, of its employees.

Intent

To ensure that all reasonable efforts are made to provide compassionate andquality care to patients and their families, to meet the patient’s plan of care,and to promote the values and philosophy of quality hospice and palliativecare. There are three means in which patient care may be discontinued:withdrawal, transfer or discharge.

Guidelines

1. Fully disclose to patients and families information about policiesregarding discontinuation of services.

2. Apply discharge criteria fairly and consistently, and have conflictresolution and appeals processes in place.

3. Do not abandon a hospice and palliative care patient once care hasbeen initiated.

4. Honor patient decisions to withdraw voluntarily from hospice andpalliative care without coercion from any employee or volunteer.

5. Ensure that, if a discharge decision is made, the organizationprovides appropriate referral information to other supportiveservices, and facilitates an orderly transition and continuity of care.

6. Prior to a discharge decision, the organization must facilitate adialogue with the patient, the team and/or family or caregivers.

7. Discontinuation of care should not be based on a single incident, such asan emergency room visit without prior authorization from the hospice.

8. Do not encourage the discontinuation of care or revocation of abenefit in a way that compromises the rights or the voluntarynature of the patient’s choice.

9. Do not discharge a patient solely due to the cost of providing their care.


DISCONTINUATION OF CARE, CONT.

Examples

Optimal� Consider discontinuing patient care if in the patient’s home

environment there is a significant danger (e.g., animals, weapons)that poses a threat to patient/employee safety and the ownercannot or will not take action to correct the situation.

� After exhausting efforts to address the problem, discontinue caredue to abuse or harassment of employees or volunteers by thepatient or family members.

Not Recommended� Discontinue care due to a perceived threat or danger without

exhausting efforts to address the obstacle to safe caregiving.

� Discontinue care due to anticipated or realized expense of care.

� Discontinue care because one of the patient’s family members is adrug abuser.

� Discontinue care because there is a question about whether thepatient has hospice coverage through his or her insurance plan.

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EMPLOYEE AND VOLUNTEER RELATIONS

Principle

Ensure that hospice and palliative care employees and volunteers are treated with respect and fairness, while supporting their ability to

obtain the highest level of skill and expertise in their profession or role.

Intent

To ensure that the organization does everything possible to support employeesand volunteers in their ability to deliver compassionate, quality care.

Guidelines

1. Recruit, select, orient, educate, and evaluate each employee andvolunteer to ensure proficiency and excellence based on identifiedjob requirements.

2. Strive continually to raise the overall level of skill, expertise, andcompetency of employees and volunteers.

3. Seek to provide a safe, clean, and pleasant workplace.

4. Respect and be sensitive to the ethnic, cultural, religious, spiritual,and lifestyle diversity of employees and volunteers.

5. Protect against discrimination and/or harassment of employees andvolunteers.

6. Support, affirm, and empower employees and volunteers in thework that they do.

7. Acknowledge the unique stressors inherent in providing hospiceand palliative care and provide access to ongoing support for allemployees and volunteers

8. Ensure that contracted providers are properly trained and qualified,and that they provide care consistent with the values andphilosophy of hospice and palliative care.

9. Foster an appropriately empowering and collaborative atmosphereto strengthen the interdisciplinary team concept and promote itthroughout the organization.

10. Have a conflict resolution process in place and ensure it is followed.


EMPLOYEE AND VOLUNTEER RELATIONS, CONT.

11. Keep employees and volunteers appropriately informed of allcritical information and communications.

12. Create a positive and supportive environment that fosters reportingof organizational, regulatory, compliance, and medical errors byemployees and volunteers.

13. Reward employees and volunteers for suggesting ways to improveethical responses to situations.

Examples

Optimal� Provide both personal and professional growth opportunities for

employees and volunteers.

� Provide counseling services for employees and volunteers whenrequired, either internally or through the organization’s EmployeeAssistance Program (EAP).

� Ensure an effective and accessible means for employees andvolunteers to safely raise concerns and questions.

� Provide employees and volunteers with a copy of the organization’sstatements of mission, vision, values and ethical principles, andprovide guidance on what type of behavior is expected in theirrespective positions.

� Structure employee and volunteer relations in order to foster aninterdisciplinary team environment.

Not Recommended� Establish a process for reporting and decreasing the risk of medical errors,

but give little attention to reviewing and resolving known problems.

� Neglect employee requests for the organization to provideappropriate safety measures in patients’ homes (necessary security,needle disposal containers, etc.).

� Require employees or volunteers to work with patients and familiesbefore being oriented to their job responsibilities.

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EXTERNAL COLLEGIAL RELATIONSHIPS

Principle

Work cooperatively with other healthcare providers, suppliers and payers to provide compassionate and competent end-of-life care.

Intent

To actively encourage civil, respectful and cooperative relationships withinthe community; to ensure that competitive practices do not interfere withquality end-of-life care; and to form collaborative relationships with otherpractitioners and healthcare providers.

Guidelines

1. Ensure the organization’s values and ethics are transparent in thecommunity they serve.

2. Treat other agencies and organizations in the community with respect.

3. Recognize and respect the vital role of other healthcare organizations.

4. Use appropriate forums to actively pursue improvements in end-of-life care.

5. Maintain the highest professional standards and clearly disclose theexistence of all relevant business and professional relationships withother organizations.

6. Share best practices with other healthcare providers.

7. Do not disparage other hospice and palliative care or healthcareorganizations.

8. Work to educate others within the healthcare community to ensurethose medically eligible for hospice and palliative care servicesreceive them in a timely fashion.

9. Support the creation of community-wide, end-of-life continuousquality improvement initiatives.

10. Honestly and conscientiously cooperate with other agencies inproviding information about referrals and to ensure that compre-hensive services are provided seamlessly to patients and families.


EXTERNAL COLLEGIAL RELATIONSHIPS, CONT.

11. Assess community end-of-life needs and evaluate the organization’sability and success at meeting them.

12. Adapt services to evolving community needs.

13. Collaborate with other organizations to provide consumereducation about end-of-life issues.

Examples

Optimal� Use external benchmarking to compare quality indicators with

other hospice and palliative care organizations.

� If a hospice perceives or hears of a problem occurring in anotherhospice, the first hospice should contact the second in order toreport what it has heard and to help improve the situation. If thiseffort does not result in improvement, the organization mayconsider contacting the licensing body to lodge a complaint.

Not Recommended� Delay responding to requests for assistance from local healthcare

providers who may not have state-of-the-art pain managementcapabilities.

� Tell patients that another doctor or hospice and palliative careprovider is inferior or sub-standard.

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25


GOVERNANCE

Principle

Adhere to governance structures that ensure the organization fulfills itsmission and purpose.

Intent

To govern effectively toward the successful achievement of an organization’smission and to take responsibility for creating, maintaining, and improvingan environment in which compassionate, quality care is provided to patientsand their families.

Guidelines

1. Preserve the core purpose and mission of the organization,regardless of its business form or organizational structure.

2. Establish and maintain a governing body has complete responsibili-ty for the organization including the establishment of a mission,purpose, and policies.

3. Ensure the governing body understands and upholds it fiduciaryobligations.

4. Develop mechanisms whereby all perceived ethical issues can beidentified, evaluated and resolved.

5. Develop mechanisms for addressing ethical issues and educatingkey stakeholders in their practical application.

6. Ensure that the governance system takes into account and buildsupon the strengths and opinions of hospice and palliative careemployees and volunteers.

7. Consistently and visibly respect diversity in all forms.

8. Lead efforts to ensure access to hospice and palliative care for allpeople facing the end of life.

9. Ensure that the selection, orientation, education, and evaluation ofemployees and volunteers are based on competency and willingnessto execute job requirements.

10. Support, affirm, and empower employees and volunteers in thedelivery of care and services.


GOVERNANCE, CONT.


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11. Recognize the extraordinary stressors inherent in hospice andpalliative care work and provide ongoing access to support foremployees and volunteers.

12. Ensure that contracted providers are properly trained and qualifiedto provide care consistent with the values and philosophy ofhospice and palliative care.

13. Promote a culture of adherence to the highest standards ofperformance and continuous improvement.

14. Develop and monitor a system for measuring compliance withethical principles and guidelines that have been adopted by theorganization.

15. Adopt a formal compliance program as a mechanism to preventfraud and abuse, provide for confidential reporting of complianceissues without fear of retribution or reprisal, strengthen operationalquality, improve the quality of services, and contribute to reducingthe cost of healthcare.

Examples

Optimal� Routinely assess the administrator’s performance and support

professional development and improvement efforts.

� Routinely monitor the organization’s programs and services.

Not Recommended� Infrequent self-assessment of performance by the governing body.

� Neglecting to establish and maintain a system that enables andencourages employees, volunteers, and contracted providers to report concerns about potential or real ethical violations, fraudulent behavior or obstacles to quality care.

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INFORMATION MANAGEMENT, CONFIDENTIALITY AND PRIVACY

Principle

Respect and protect confidential information.

Intent

To ensure that all patient/family and organizational information is affordedadequate respect and protection.

Guidelines

1. Respect and protect the confidentiality of patients, families,caregivers, volunteers and co-workers.

2. Respond with sensitivity to any interruptions of privacy that arenecessitated by the delivery of care.

3. Respect patient privacy and personal boundaries and do not enterinto the patient’s family life and affairs any further than is requiredto meet the goals of the care plan.

4. Limit the sharing of information acquired to support the interdisci-plinary plan of care to a “need to know” basis, and to the extentlegally and prudently possible, to honor the patient’s wishesregarding this information.

5. Recognize the vulnerability and privacy needs of the patient andfamily, thus displaying extraordinary sensitivity in offering opportu-nities to promote hospice and palliative care.

6. Adopt business policies and practices that comply with theAdministration simplification requirements and standards of theHealth Insurance Portability and Accountability Act (HIPAA) of 1996.


INFORMATION MANAGEMENT, CONFIDENTIALITY AND PRIVACY, CONT.


28

Examples

Optimal� Patient information is not given to another provider unless a proper

release form has been submitted by the appropriate parties.

� Patient and financial records are confidential and securely stored inaccordance with HIPAA standards.

� Information about staff and volunteers is not shared beyond the HRand supervisory roles.

Not Recommended� Discuss patient and family information with a co-worker outside of

the team space or in a common area of the office.

� Share confidential patient information with the patient’s neighbor,friend, or family member that the patient has not included on thesigned release of information form.

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MARKETING AND REFERRALS

Principle

Follow marketing and referral practices that promote compassionate, high-quality care for patients and their families.

Intent

To enhance public trust and access to hospice and palliative care; to servethe best interests of the patient and families; to base these relationships onthe welfare of the patient/family/caregiver, not upon rewards andenticements; to share full and complete information and to supportinformed decision-making for and among patients and their families.

Guidelines

1. Disclose relevant business and financial relationships to patientsand families so that they can make informed and knowledgeabledecisions.

2. Ensure that marketing relationships do not limit the agency’s abilityto disseminate information to patients and families.

3. Ensure that financial reimbursement is based on actual servicesprovided.

4. Ensure that all staff incentives and bonuses are subject toappropriate checks and balances as required by the organization’spolicies and applicable laws.

5. Be truthful, accurate, and transparent in public advertising andinformation dissemination


MARKETING AND REFERRALS, CONT.


30

Examples

Optimal� The organization ensures that patients and families receive and

understand information regarding care and services, as well asbusiness and financial relationships. Although handing a patient areport or brochure about the organization is technically“disclosure”, explaining the information is more patient-centeredand prudent.

� If, for emotional and/or cognitive reasons, a family is unable tomake a decision regarding hospice and palliative care services, theorganization engages state and/or local social services to assist themin understanding their options and making a decision about whichservices would meet the needs of the patient.

� Acknowledge financial relationships with other providers duringthe intake and consent process.

� Participate in a voluntary coalition to promote the importance ofend-of-life care planning with other health care providers in thecommunity.

Not Recommended� The organization participates in a contract that contains an

”exclusive relationship” clause – i.e. a health plan agreement thatsays referrals cannot be made outside of the network.

� Ask newly bereaved family members to promote hospice services inadvertisements.

31


PUBLIC INFORMATION

Principle

Develop and disseminate accurate, honest and timely information abouthospice, palliative care and other end-of-life issues to local, state and

national communities.

Intent

To create and distribute accurate and fair public information and educationin a timely manner and to foster ongoing relationships based on trust.

Guidelines

1. Take a responsible and active role in the creation and disseminationof public information concerning hospice and palliative care.

2. Engage in dialogue about end-of-life issues in public forums.

3. Facilitate and promote consumer discussions regarding end-of-lifecare.

4. Serve on committees or in groups concerned with policy-makingdecisions which affect healthcare.

5. Encourage the inclusion of hospice and palliative care in all federal,state, and commercial healthcare plans.

6. Recognize the organization’s responsibility to reach out and makeinformation available to all sectors of the community.

7. Fully disclose information regarding cost, services, complaintpolicies and policies regarding discontinuation of care.

8. Be prepared to deliver what the organization promises to thepatient/family, and community.

9. Recognize the vulnerability and privacy needs of hospice andpalliative care patients and families.

10. Design educational materials to maximize public understanding,and where appropriate, have these materials (or similarlyappropriate materials) available in languages used within thecommunity served by the organization.


PUBLIC INFORMATION, CONT.


32

Examples

Optimal� The organization takes extreme care to avoid potentially misleading

statements to any of its audiences.

Not Recommended

� The organization portrays itself as “preferred” or implies that thereis a preferred relationship when this is not the case.

� Active patients and their families are recruited to participate in paidadvertisements for an individual program.

� The organization uses market pressures to justify the use ofpractices that may undermine the integrity of hospice and palliativecare or the trust placed in the organization by the public.

33


RESEARCH

Principle

Support the advancement of knowledge to improve the provision, qualityand outcomes of hospice and palliative care.

Intent

To assist in developing knowledge, new understandings, and practices in thefield through a process that maintains scientific and moral integrity; to offerpatients, family members, and/or other research subjects the opportunity toparticipate in the research process to help improve practices related to hospiceand palliative care; and to appropriately balance the pursuit of knowledgewith the duty to protect patients, families, and other research subjects.

Guidelines

1. Thoroughly evaluate research proposals and similar cooperativearrangements to ensure that they conform to all appropriateregulations, and that they contain adequate protections forpatients, families and other research subjects.

2. Ensure patients and families understand that research is not necessarilytherapeutic and that election to participate is entirely voluntary.

3. Educate employees in the proper methods and protocols regardingthe conduct of research.

4. Have a meticulous process in place to thoroughly evaluate theresearch protocol before engaging in research projects.

5. Utilize an institutional review board (IRB) for all human subjectresearch.

6. Review relevant research findings regularly to enhance the practiceof hospice and palliative care.

7. Develop and utilize internal mechanisms for the systematiccollection of data within the organization for improving the qualityof hospice and palliative care, including outcome measures thattrack the organization’s actual performance.

8. Establish mechanisms for sharing research findings with others toadvance the provision of hospice and palliative care.


RESEARCH, CONT.


34

Examples

Optimal� Hospice and palliative care employees ensure that patients

understand the research project and provide informed consent priorto participating in the study.

� Patient names and identifiers are kept confidential and researchrecords are secured in all phases of a research project.

� Surrogate decisions for research participation are clearly and appro-priately documented.

Not Recommended� Human subject research on patients receiving hospice and/or

palliative care is begun before researchers secure InstitutionalReview Board approval.

� Research findings are shared with only a few of the organization’sclosest associates, instead of the healthcare community at large.


35

GLOSSARY OF KEY TERMS

Admission: The formal process of accepting responsibility to care for a patient.

Autonomy: From the Greek word meaning “self-governance,” an ethical principleenjoining respect for the capacity of the individual to form and act uponhis/her own plans, aspirations, and preferences.

Beneficence: From the Latin word for “doing good,” an ethical principle stating the dutyto do good both individually and for all.

Best Interest: A standard of decision-making for people who are not able to makedecisions for themselves (e.g. a person in a coma). The best interest standardis based on what a reasonable person would want done in a given situation.

Confidentiality: The duty to respect privacy of information and action.

Guidelines: Generalized models and methods that have proven to be useful in previousprojects. Due to their general nature, guidelines do not always demandstrict adherence, but do offer direction. If one finds reasonable cause, notfollowing the guidelines can sometimes be appropriate.

IRB (Institutional Review Board): An independent, peer review panel that makes recommendations for theacceptability of research intending to use hospice and palliative carepatients, employees or others as subjects.

Justice: An ethical principle stating the duty to treat all fairly, distributing the risksand benefits equally.

Leadership: The senior management of a hospice and palliative care organization. Thiscould be the CEO, president, members of the board, senior staff or otherpersons who have financial and executive decision capabilities.


36

Nominal Value: An agreed-upon maximum value a gift may have. Most organizationsdefine a gift under a specific monetary value (i.e. $25, $50 or $100) as a giftof nominal value. Employees, volunteers, and board members usually arerequired to declare a gift given to them.

Nonmaleficence: An ethical principle stating the duty to cause no harm, both individuallyand for all.

Organization: Any intentionally organized group of individuals who share a commongoal. Throughout the NHPCO Principles and Guidelines, organizationrefers to both hospice and palliative care organizations and institutions.

Organizational Ethics: Standards of conduct concerning how hospice and palliative care organiza-tions, employees and volunteers should behave based on guidelines derivedfrom core principles.

Principles: Like guidelines, principles are generalized models or templates for behavior.The difference between a principle and a guideline is that principlesrepresent a strong commitment to a certain set of values or ideas that maybe enforced by the organization, whereas guidelines do not always demandstrict adherence.

Quality of Life: The nature of a person’s experience in living. It does not imply that life iswithout inherent value or dignity.

Respect (for persons): The duty to honor others, their rights, and their responsibilities. Showingrespect for others implies that they are not treated as a mere means to an end.

Transparent:Organizations can be called transparent if they have open and fair systemsfor informing stakeholders of their activities and decisions.


37

2006 ETHICS COMMITTEE

Kathleen Bliss Hospice of the North Shore

Danvers, MA

Charlene M. BuntsWellStar Community Hospice

Austell, GA

Pamela DalinisCenter for Ethics and Health Policy

Villa Park, IL

Cathy FranklinMercy Health Hospice

Darby, PA

Linda F. Grilley, R.N., M.S.N.Program Director

Comfort Care and Hospice ServicesWausau, WI

Charles M. Harrison, M.D. Baltimore Veterans Affairs Medical Center

Baltimore, MD

William HavekostHospice of Central Iowa

West Des Moines, IA

Kathleen HertrichNew BeaconAlabaster, AL

Diane E. HoffmanUniversity of Maryland School of Law

Baltimore, MD

Janet L. Jones, R.N., F.A.A.M.A., B.S.N. (Chair)

President and CEOAlive Hospice, Inc.

Nashville, TN

Yolonda Jordan—Staff LiaisonDivision of Quality End of Life Care

National Hospice and Palliative CareOrganization

Alexandria, VA

Joanne King, L.C.S.W.Hospice of Volusia/Flagler

Port Orange, FL

Jennifer KrossIowa City Hospice

Iowa City, IA

Jonathan KrutzExecutive Director

Nebraska Hospice and Palliative Care AssociationEagle, NE

Paul D. Longenecker, R.N., M.B.A., C.A.N.President/Lead Consultant

The Transformational GroupWesterville, OH

Mimi Mahon, Ph.D., R.N., F.A.A.N.George Mason University College of

Health and Human ServicesFairfax, VA

David McBride, M.S. Executive Director

Hospice of San Angelo, Inc.San Angelo, TX

Martha McCusker, M.D., F.A.C.P.Hospice of the Twin Cities

Plymouth, MN

Mark Elliott Miller, M.P.H.Asperion Hospice

Euless, TX


38

Judi Lund Person – Staff LiaisonVP Division of Quality and Access


Alexandria, VA

Mary Lee Warren, B.S. Executive Director

Judith Karman Hospice, Inc.Stillwater, OK

Charles Wellman, M.D. Medical Director

Hospice of the Western Reserve, Inc.Cleveland, OH

Emil Zuberbueler – Staff LiaisonDivision of Quality and Access


Alexandria, VA

NHPCO Leadership Team

Additional Reviewers

Roseanne Berry, R.N. Chief Compliance Officer

VistaCare, Inc.Scottsdale, AZ

Barbara Bouton, M.A.Director of Professional DevelopmentNational Hospice and Palliative Care

OrganizationAlexandria, VA

John Carney, M.Ed.Vice President, Aging and End of Life

Center for Practical BioethicsKansas City, MO

Leslie Smith, R.N., M.S.N.Cave Creek, AZ

Alan R. Yuspeh, J.D., M.B.A.Senior Vice President, Ethics, Compliance

and Corporate Responsibility HCA, Inc.

Minneapolis, MN

Kathy Brandt, M.A.

Stephen Connor, Ph.D.

Jon Keyserling, J.D.

Judi Lund Person, M.P.H.

Galen Miller, Ph.D.

Jon Radulovic, M.A.

Advance Directives/Advance Care Planning ....................................40

Artificial Nutrition and Hydration....................................................40

Children’s Issues ................................................................................41

Communication ................................................................................41

Do Not Resuscitate (DNR) ................................................................42

Decision Making................................................................................42

End-of-Life Medical Management/End-of-Life Care ........................43

Ethics Basics/Foundations ................................................................43

Ethics Consultation/Ethics Committees ..........................................44

Futility ..............................................................................................44

Hope/Spirituality/Miracles ................................................................45

Hospice ..............................................................................................45

Informed Consent ............................................................................45

Intensive Care Unit Care at the End of Life ....................................45

Long Term Care ................................................................................46

Organ Donation After Cardiac Death ..............................................46

Palliative/Respite Sedation ................................................................46

Patient Preferences ............................................................................47

Physician Assisted Suicide ................................................................47

Prognosis ..........................................................................................47

Regulatory Considerations ................................................................47

Research With Terminally Ill Patients ..............................................48

Symptom Management ....................................................................48

Withdrawing/Withholding Life-Prolonging Therapies ....................48

Other Resources ................................................................................49


39

RESOURCES

Table of Contents

PLEASE NOTE, NHPCO’S WEBSITE HAS BEEN REDESIGNED SINCE THIS PUBLICATION WAS RELEASED AND THE URLS LISTED MAY NOT BE ACCURATE. VISIT NHPCO.ORG TO SEARCH FOR POSSIBLE RESOURCES. WE APOLOGIZE FOR ANY INCONVENIENCE.


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Advance Directives/Advance Care PlanningEmanuel, L. (2000). How living wills can help doctors and patients talk about dying. BritishMedical Journal, 320, 1618-1619.

Fagerlin, A. & Schneider, C.E. (2004). Enough. The failure of the living will. Hastings CenterReport, 34(2), 30-42.

Happ, M.B., Capezuti, E., Strumpf, N.E., Wagner L., Cunningham S., Evans L., Maislin, G. (2002). Advancecare planning and end-of-life care for hospitalized nursing home. J Am Geriatrics Soc. 50, 829-35.

Kass-Bartelmes, B.L. & Hughes, R. (March, 2003). Advance Care Planning: Preferences for careat the end of life. Research in Action. AHRQ. Issue 12.

Kessler, D.P. & McClellan, M.B. (2004). Advance directives and medical treatment at the end oflife. J Health Econ. 23(1), 111-27.

NHPCO’s Caring Connections: provides free advance directive documents and instructions foreach state. www.caringinfo.org

Sabatino, C. P. (1994). Ten legal myths about advance medical directives. Clgh Rev, 28, 653-6.

Schiff, R., Rajkumar, C., & Bulpitt, C. (2000). Views of elderly people on living wills: Interviewstudy. British Medical Journal, 320, 1640-1641.

Smucker, W.D., Houts, R.M., Danks, J.H., Ditto, P.H., Fagerlin, A., & Coppola, K.M. (2000). Modalpreferences predict elderly patients’ life-sustaining treatment choices as well as patients’ chosensurrogates do. Medical Decision Making, 20, 271-280.

Tilden, V.P., Tolle, S.W., Drach, L.L., & Perrine, N.A. (2004). Out-of-hospital death: Advance care planning,decedent symptoms, and caregiver burden. Journal of the American Geriatric Society, 52, 532-539.

Upadya, A., Muralidharan, V., Thorevska, N., Amoateng-Adjepong, Y., Manthous, C.A. (2002).Patient, physician, and family member understanding of living wills. Am J Respir Crit Care Med, 166,1430-5. Epub 2002 Sep 11.

Artificial Nutrition and HydrationAAHPM. (2001). Position statement. Statement of the use of nutrition and hydration. 16 Sept2001. www.aahpm.org/positions/nutrition.html

Casarett, D., Kapo, J., & Caplan, A. (2005). Appropriate Use of Artificial Nutrition and Hydration— Fundamental Principles and Recommendations. New England Journal of Medicine 353, 2606-2612. Report for the ANH panel convened by the U of PA Center for Bioethics:www.bioethics.upenn.edu/nutrition/

Crass, K. L. (2001). If he would just eat, I know he would get stronger. Quarterly Newsletter ofthe American Academy of Hospice and Palliative Medicine, 2(1), 1, 12-14.

Dresser, R. (2004). Schiavo: A hard case makes questionable law. Hastings Center Report, 34(3), 8-9.

Fainsinger, R.L., Bruera, E., & Watanabe, S. (1996). Rehydration in palliative care [Letter to theeditor]. Palliative Medicine, 10, 165.


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Finucane, TE, Christmas, C., Travis, K. (1999). Tube feeding in patients with advanced dementia:A review of the evidence. JAMA, 282, 1365-1370.

Gillick, M.R. (2000). Rethinking the role of tube feeding in patients with advanced dementia.NEJM, 342, 206-210.

Hospice and Palliative Nurses’ Association. (2003). HPNA Position Statement. Artificial nutritionand hydration in end-of-life care. www.hpna.org/filemaintenance_view.aspx?ID=21

Mitchell, S.L., Kiely, D.K., & Lipsitz, L.A. (1998). Does artificial enteral nutrition prolong thesurvival of institutionalized elders with chewing and swallowing problems. Journal ofGerontology, 53A, M207-M213.

National Hospice and Palliative Care Organization. (2005). NHPCO Position Statement. Artificialnutrition and hydration in end-of-life care. www.nhpco.org/files/public/ANH_Statement_Commentary.pdf

Rudberg, M.A., Egleston, B.L., Grant, M.D., & Brody, J.A. (2000). Effectiveness of feeding tubes innursing home residents with swallowing disorders. Journal of Parenteral & Enteral Nutrition, 24, 97-102.

Shannon, T.A. & Walter, J.J. (2004). Implications of the Papal allocution on feeding tubes.Hastings Center Report, 34(4), 18-20.

Children’s IssuesBaren, J. M. & Mahon, M. (2003). End of life issues in the pediatric emergency department. ClinPed Emer Med, 4, 265-272.

Burghen, E.A., Haluska, H.B., Steen, B.D., Hinds, P.S. (2004). Children and adolescents partici-pating in research and clinical care decisions at the end of life. Journal of Hospice and PalliativeNursing, 6, 176-186.

Carter, B. & Levetown, M. “Neonatal Care and Programming: Ethical, Legal and PracticalInfluences on Decision-Making.

Children’s International Project on Palliative/Hospice Services. (2000). Compendium of PediatricPalliative Care. “Ethical Issues in the Care of a Child with a Life-Threatening Condition” Section 2,pages 27-48. “Applying Hospice Principles to the Care of the High Risk Newborn: Medical and EthicalDecision Making” Section 1, pages 14-17. http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4305

Mahon, M. (1993). Children's concept of death and sibling death from trauma. Journal ofPediatric Nursing, 8, 335-344.

Weise, K. (2004). Finding our way. Hastings Center Report, 34(4), 8-9.

CommunicationKaufert, J.M. & Putsch, R.W. (1997). Communication through interpreters in healthcare: Ethicaldilemmas arising from differences in class, culture, language, and power. Journal of Clinical Ethics,8(1), 71-87. http://nhpco.andornot.com/infocenter.htm

Knauft, E., Nielsen E.L., Engelberg R.A., Patrick D.L., Curtis J.R. (2005). Barriers and facilitatorsto end-of-life care communication for patients with COPD. Chest. 127, 2188-96.


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Langewitz, W, Denz, M., Keller, A., Kiss, A., Rüttimann, S, & Wössmer, B. (2002). Spontaneoustalking time at start of consultation in outpatient clinic: Cohort study. British Journal ofMedicine, 325, 682-3.

Maguire, P. & Pitceathly, C. (2002). Key communication skills and how to acquire them. BritishJournal of Medicine, 325, 697-700.

Do Not Resuscitate (DNR)Baumrucker, S. J. (2006). Ethics Roundtable. Case study. Advisability of partial code orders. AmericanJournal of Hospice & Palliative Medicine, 23, 59-64. http://ajh.sagepub.com/cgi/reprint/23/1/59

Eachempati S.R., Hydo L., Shou J., Barie P.S. (2006). Sex differences in creation of do-not-resuscitate orders for critically ill elderly patients following emergency surgery. J Trauma. 60, 193-7; discussion 197-8.

Eliasson, A.H., Parker, J.M., Shorr, A.F., Babb, K.A., Harris, R., Aaronson, B.A., & Diemer, M.(1999). Impediments to writing DNR orders. Archives to Internal Medicine, 159, 2213-2218.

Hakim, R.B. et al. (1996). Factors associated with do-not-resuscitate orders: Patients’preferences, prognoses, and physicians’ judgments. Ann Int Med, 125, 284-293.

Leonard, C. T., Doyle, R.L. & Raffin, T.A. (1999). Do-not-resuscitate orders in the face of patientand family opposition. Crit Care Med, 27, 1045-1047.

Decision MakingBuchanan R.J., Bolin J., Wang S., Zhu L., Kim M. (2004). Urban/rural differences in decisionmaking and the use of advance directives among nursing home residents at admission. J RuralHealth. 20, 131-5.

Fagerlin, A., Ditto, P.H., Danks, J.H., Houts, R.M., & Smucker, W.D. (2001). Projection insurrogate decisions about life-sustaining medical treatments. Health Psychology, 20(3): 166-175.

Farkas, H. (2003). End-of-life decision making. 18 March 2003.www.emedicinehealth.com/end-of-life_decision_making/article_em.htm

Haley, W.E., Allen, R.S., Reynolds, S., Chen, H., et. al. (2002). Family issues in end-of-life decisionmaking and end-of-life care. The American Behavioral Scientist. 46, 284-298.

Hayamin, B. (2002). In the winter of life: A values-based Jewish guide for decision making at the endof life. Detroit: Wayne State University Press.

Kurent, J.E. (2003). Case presentation. Medical decision making in hopeless situations: Thelong-lost son. Journal of Pain and Symptom Management, 25, 191-192.

Silveira, M.J., DiPiero, A., Gerrity, M.S., & Feudtner, C. (2000). Patients’ knowledge of options atthe end of life: Ignorance in the face of death. Journal of the American Medical Association, 284,2483-2488.


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Meisel, A., Snyder, L., & Quill, T. (2000). Seven legal barriers to end-of-life care: Myths, realities,and grains of truth. JAMA, 284, 2495-2501.

Menikoff, J. (2002). Law and Bioethics: An introduction. Washington, D.C.: Georgetown University Press.

Morrison, R. S., Meier, D.E., & Cassel, C.K. (1996). When too much is too little. NEJM, 335, 1755-1759.

National Academy of Sciences. (2003). Describing death in America: What we need to know.Institute of Medicine, National Research Council. Washington, DC: National Academy Press.Chapter 1, Introduction and Overview.

Rabow, M.W., Hauser, J.M., Adams, J. (2004). Supporting family caregivers at the end of life: "theydon't know what they don't know.” JAMA, 291, 483-91.

Steinhauser, K.E., et al. (2000). In search of a good death: Observations of patients, families, andproviders. Ann Int Med, 132, 825-832.

Steinhauser, K.E., Christakis, N.A., Clipp, E.C., McNeilly, M., McIntyre, L.M., & Tulsky, J.A.(2000). Factors considered important at the end of life by patients, family, physicians, and othercare providers. Journal of the American Medical Association, 284, 2476-2482.

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Teno, JM. (2002). Medical care inconsistent with patients' treatment goals: association with 1-year Medicare resource use and survival. Journal of the American Geriatrics Society, 50, 496-500

Truog, R.D. Cist. A.F.M., Brackett, S.E., Burns, J.P., Curley, M.A.Q., Danis, M., DeVita, M.A.,Rosenbaum, S.J., Rothenberg, D.M., Sprung, C.L., Webb, S.A., Wlody, G.S., Hurford, W.E. (2001).Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of theSociety of Critical Care Medicine. Crit Care Med, 29, 2332-2348.

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"Trials of War Criminals before the Nuremberg Military Tribunals under Control Council LawNo. 10", Vol. 2, pp. 181-182. Washington, D.C.: U.S. Government Printing Office, 1949.

Williams, J.R. (2005). Medical ethics in contemporary clinical practice. J Chin Medical Assoc, 68,495-99. http://www.vghtpe.gov.tw/~jcma/68/11/495.pdf

Ethics Consultation/Ethics CommitteesAulisio, M.P., Arnold, R.M., & Youngner, S.J. (2000). Health care ethics consultation: Nature,goals, and competencies. A position paper from the Society for Health and Human Values--Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation. Annals ofInternal Medicine, 133, 59-69.

Orr, R. D. (2001). Methods of conflict resolution at the bedside. AJOB, 1(4), 45-46.

Schneiderman, L.J., Gilmer, T., Teetzel, H.D., Dugan, D.O., Blustein, J., Cranford, R., Briggs, K.B.,Komatsu, G.I., Goodman-Crews, P., Cohn, F., Young, E.W.D. (2003). Effect of ethics consultationson non-beneficial life-sustaining treatments in the intensive care unit. JAMA, 290, 1166-1172.

FutilityBrody, H. (1998). Bringing clarity to the futility debate: Don’t use the wrong cases. CambridgeQuarterly of Healthcare Ethics, 7, 269-278.

Youngner, S.J. (1996). Medical futility. Critical Care Clinics, 12, 165-178.

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Hope/Spirituality/MiraclesCrawley, L. M. (2004). Miracles and medicine: Helping families navigate the course. Journal ofPain and Symptom Management, 25, 192-194.

Groopman, J.E. (2005). A strategy for hope: A commentary on necessary collusion. Journal ofClinical Oncology, 23, 3151-3152.

Herth, K.A. (2001). Development and implementation of a hope intervention program.Oncology Nursing Forum, 28, 1009-1016.

National Hospice and Palliative Care Organization. (2001). Guidelines for Spiritual Care inHospice. “Ethics” page 13. http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4305

HospiceBrenneis, J. & Hay, A. (2002). The patient needs hospice and nobody’s home: Exploring theethics of autonomy. NHPCO Conference Session Recording (JCC2002 Session 2B).http://nhpco.andornot.com/infocenter.htm

Christakis NA, Iwashyna TJ. (2000). Impact of individual and market factors on the timing ofinitiation of hospice terminal care. Med Care, 38, 528-41.

Daugherty, C.K. & Steensma, D.P. (2002). Overcoming obstacles to hospice care: An ethical examinationof inertia and inaction. J Clin Onc, 20, 2752-2755. http://www.jco.org/cgi/content/full/20/11/2752

Fife, R. (2005). Ethical dilemmas in hospice care. In Hospice Foundation of America, Living with Grief:Ethical dimensions in end of life care. www.hospicefoundation.org/hfaPublications/books/lwg2005/fife.pdf

Han, B., Remsburg, R.E., McAuley, W.J., Keay, T.J., Travis, S.S. (2006). National trends in adulthospice use: 1991-1992 to 1999-2000. Health Affairs, 25, 792-799.

Mahon, M. M. (2006). Technology in hospice: Is it a contradiction? Home Healthcare Nurse, Sept.

National Hospice and Palliative Care Organization. (2004). The discontinuation of hospice care:Ethical issues. http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4305

Informed ConsentDepartment of Veterans Affairs. (2006). Medical: Informed consent—Designate Health CareProfessionals to obtain informed consent. Federal Register, 71(21), 5204. 38 CFR Part 17. http://a257.g.akamaitech.net/7/257/2422/01jan20061800/edocket.access.gpo.gov/2006/pdf/E6-1218.pdf

Westberg, K, Lynøe, N., Lalos, A, Löfgren, M., & Sandlund, M. (2001). Getting informed consentfrom patients to take part in the clinical training of students: Randomized trial of two strategies.British Medical Journal, 323, 488-489.

Intensive Care Unit Care at the End of LifeCampbell M.L. & Guzman J.A. (2004). A proactive approach to improve end-of-life care in amedical intensive care unit for patients with terminal dementia. Crit Care Med. 32, 1839-43.

Rady, MY, Johnson, DJ. (2004). Admission to intensive care unit at the end-of-life: is it aninformed decision? Palliative Medicine, 18, 705-11.

Long Term CareHarrison, C.M. & Schwars, J.K. (2004). Case study from a Maryland Long term care facility. Mid-Atlantic Ethics Committee Newsletter. Aug, 8-10.

McAuley, W.J. & Travis, S.S., (2003).Advance care planning among residents in long-term care.Am J Hosp Palliat Care. 20, 353-9.

National Hospice and Palliative Care Organization. (2001). Hospice Care in Nursing Facilities:An Educational Resource for Effective Partnerships in End-of-Life Care. Item #700330. Module7: Advocating for Resident/Patient Choice. www.nhpco.org/marketplace

Travis S.S., Bernard, M., Dixon, S., McAuley, W.J., Loving, G., McClanahan, L. (2002). Obstacles topalliation and end-of-life care in a long-term care facility. Gerontologist,42, 342-9.

Organ Donation after Cardiac DeathMahon, M. M. (2005) Organ donation after cardiac death. In D.J. Lynn-McHale & K.K. Carson,Eds. AACN Procedure manual for critical care (5th ed.). Philadelphia: W.B. Saunders.

Palliative/Respite SedationAAHPM. (1997). Position statement. Sedation at the end of life. 25 June 1997.www.aahpm.org/positions/suicide.html

Hospice and Palliative Nurses’ Association. (2003). HPNA Position Statement. Palliative Sedationand end of life. www.hpna.org/filemaintenance_view.aspx?ID=26

Lawlor, P. (2002). Palliative Care Tips: Terminal Sedation. Regional Palliative Care Program inEdmonton Alberta.

Morita T. (2004). Palliative sedation to relieve psycho-existential suffering of terminally ill cancerpatients. Journal of Pain & Symptom Management, 28, 445-50.

Morita T, Chinone Y, Ikenaga M, Miyoshi M, Nakaho T, Nishitateno K, Sakonji M, Shima Y,Suenaga K, Takigawa C, Kohara H, Tani K, Kawamura Y, Matsubara T, Watanabe A, Yagi Y, SasakiT, Higuchi A, Kimura H, Abo H, Ozawa T, Kizawa Y, Uchitomi Y; Japan Pain, Palliative Medicine,Rehabilitation, and Psycho-Oncology Study Group (2005). Ethical validity of palliative sedationtherapy: a multicenter, prospective, observational study conducted on specialized palliative careunits in Japan. J Pain Symptom Manage, 30, 308-19.

Muller-Busch, H.C, Andres, I, & Jehser, T. (2003). Sedation in palliative care—A critical analysis ofseven years experience. BMC Palliative Care, 2. 12 September 2003. www.biomedcentral.com/1472-684X/2/2

National Hospice and Palliative Care Organization. (2001). Total Sedation: A hospice andpalliative care resource guide. http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4305

Quill, T. E. & Byock, I. R. (2000). Responding to intractable terminal suffering: The role ofterminal sedation and voluntary refusal of food and fluids. Arch Int Med, 132, 408-414.

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Patient PreferencesArora, N.K. & McHorney, C.A. (2000).Patient preferences for medical decision making: Whoreally wants to participate? Med Care. 38(3):335-41.

Fried, T. H., et al. (2002). Understanding the treatment preferences of seriously ill patients.NEJM, 346, 1061-66.

Physician Assisted SuicideAAHPM. (1997). Position statement. Comprehensive end-of-life care and physician-assistedsuicide. 25 June 1997. 8 September 2003. www.aahpm.org/positions/suicide.html

American Nurses Association Task Force on the Nurse's Role in End-of-Life Decisions Center forEthics and Human Rights. (1994). Ethics and human rights position statement: Assisted Suicidehttp://www.nursingworld.org/readroom/position/ethics/prtetsuic.htm

Lynn, J. (1999). Debates of physician-assisted suicide are a barrier to real reforms in caring forpatients. WJM, 171, 281.

National Hospice and Palliative Care Organization. (2005). NHPCO Position Statement.Physician Assisted Suicide. http://www.nhpco.org/files/public/PAS_Resolution_Commentary.pdf

PrognosisLamont, E. B. & Christakis, N.A. (2001). Prognostic disclosure to patients with cancer near theend of life. Ann Int Med, 134, 1096-1105.

Tanneberger, S., Malavasi, I., Mariano, P., Pannuti, F. & Strocchi E., Planning Palliative orTerminal Care: The Dilemma of Doctors’ Prognoses in Terminally Ill Cancer Patients Annals ofOncology, 13, 1320-1322. http://annonc.oxfordjournals.org/cgi/content/full/13/8/1320-a

Regulatory ConsiderationsDepartment of Health and Human Services. (2000) Standards for Privacy of IndividuallyIdentifiable Health Information. Federal Register, 65, 250, 45 CFR Parts 160 and 164. 82461-82511

Department of Health and Human Services. (2002). Medicare program; Hospice careamendments. Federal Register, 67(226), 70363. 42 CFR Part 418http://a257.g.akamaitech.net/7/257/2422/14mar20010800/edocket.access.gpo.gov/2002/pdf/02-29798.pdf

Department of Health and Human Services. (2005). Supplemental Standards of Ethical Conductand Financial Disclosure Requirements for Employees of the Department of Health and HumanServices. The Federal Register, 70(22), 5543. http://a257.g.akamaitech.net/7/257/2422/01-jan20051800/edocket.access.gpo.gov/2005/pdf/05-2029.pdf

Office of the Inspector General, DHHS. (1999). Publication of the OIG Compliance Program,Guidance for Hospices. Federal Register, 64(192), 54031ff. http://www.dwt.com/practc-/healthcr_compliance/publications/OIG_Hosp_Compliance/docs/hospice.pdf

Research With Patients Who Are Terminally IllBoult, L., Dentler, B., Volicer, L., Mead, S, Evans, J.M. (2003). Ethics Committee of the AmericanMedical Directors Association. Ethics and research in long-term care: A position statement fromthe American Medical Directors Association. J Am Med Dir Assoc. 4(3),171-4.

Symptom ManagementBeth Israel University Medical Center. Palliative Care. Ethical/Legal Issues. Ethics and Law.http://www.stoppain.org/palliative_care/content/ethical/law.asp

Fine, P. (2006). Key issues in pain care: Managing complex cases involving opioid therapy.NHPCO’s Newsline, 17(5), 1, 4-5. http://www.nhpco.org/files/public/newsline/2006/May2006.pdf

Hospice and Palliative Nurses’ Association. (2004). HPNA Position Statement. Providingopioids at the end of life. www.hpna.org/filemaintenance_view.aspx?ID=27

Lee, M. Care of the depressed patient. Markkula Center for Applied Ethics. Santa ClaraUniversity. http://www.scu.edu/ethics/dialogue/candc/cases/patient.html

Roy, D. J. (1998). The relief of pain and suffering: Ethical principles and imperatives. J PallCare, 14, 3-5.

Withdrawing/Withholding Life-Prolonging TherapiesAckerman, R. (2000). Withdrawing and withholding life sustaining treatment. AmericanFamily Physician, 62(7). http://www.aafp.org/afp/20001001/1555.html

Asch, D.A., Faber-Langendoen, K., Shea, J.A., Christakis, N.K. (1999). The sequence ofwithdrawing life-sustaining treatment from patients. The American Journal of Medicine, 107(2),153-156.

Blackhall, L.J., Frank, G., Murphy, S.T., Michel, V., Palmer, J.M., & Azen, S.P. (1999). Ethnicityand attitudes towards life sustaining technology. Social Science and Medicine, 48, 1779-1789.

Goold, S. D, Williams, B. & Arnold, R. M. (2000). Conflict regarding decisions to limittreatment. A differential diagnosis. JAMA, 283, 909-914.

Hamel, M.B., Teno, J.M., Goldman, L., Lynn, J., Davis, R.B., Galanos, A.N., Desbiens, N.,Connors, A.F., Wenger, N., & Phillips, R.B. (1999). Annals of Internal Medicine, 130,116-25.

Rhymes, J.A., McCullough, L.B., Luchi, R.J., Teasdale, T.A., Wilson, N. (2000). Withdrawingvery low-burden interventions in chronically ill patients. JAMA, 238, 1061-1063.

Wiegand, D.L. (2006). Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: interactions between patients' families, healthcare providers, andthe healthcare system. Am J Crit Care, 15, 178-87.


RESOURCES

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Other ResourcesAmerican College of Obstetricians and Gynecologists. (2003). Statement of the ACOGcommittee on ethics regarding ethical implications of pelvic examination training.http://www.acog.org/from_home/publications/press_releases/nr04-25-03.cfm

JCAHO. (2003). Crosswalk of 2004 Patient Rights and Organization Ethics Standards forhospitals to 2004 ethics, rights, and responsibilities standards for hospitals.

Mohr, W. K., Mahon, M. M. & Noone, M. J. (1998). A restraint on restraints. Archives ofPsychiatric Nursing, 12(2), 95-107.

NHPCO’s Ethics Committeehttp://www.nhpco.org/i4a/pages/index.cfm?pageid=4701

NHPCO’s Managed Care Task Forcehttp://www.nhpco.org/i4a/pages/index.cfm?pageid=3293

NHPCO’s Regulatory Subcommitteehttp://www.nhpco.org/i4a/pages/index.cfm?pageid=4705

NHPCO Technical Assistance Resources

� Standards of Practice

� Ethical Principles: Guidelines for Hospice and Palliative Care Clinical and Organizational Conducthttp://www.nhpco.org/i4a/pages/index.cfm?pageid=3273&openpage=3273

Orona, C., Koenig, B., Davis, A. (1994). Cultural Aspects of Nondisclosure. Cambridge Quarterly ofHealthcare Ethics, 3, 338-46. http://nhpco.andornot.com/infocenter.htm.

Notes

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Notes

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