Death and Dying Introduction - health.gov.bc.ca...accessibility of services, need for caregiver support and preparation of the patient for death and dying, as well as health human

Part II: Summary of Input on the Conversation on Health Page 1

Death and Dying The cost of end-of-life care and British Columbia’s aging demographic were among the issues raised by many participants during the Conversation on Health. The accessibility of services, need for caregiver support and preparation of the patient for death and dying, as well as health human resources and doctor-patient interactions in end-of-life care, were highlighted in many discussions and submissions. Here is a selection of what British Columbians had to say on the subject of death and dying.

The Cost of End-of-Life Care

Discussions about the cost for end-of-life care focus on the need for more funding to improve available services. Many participants see an investment in home care and hospice as a more cost-effective alternative to the current approach to end-of-life care. Others express concern that there is no reliable long-term funding structure for palliative, hospice or home care. This, some suggest, results in more time being spent on fundraising rather than on patient care. Others say that if one-third of a person's health care expenses occur in the last year of person's life, there are moral and ethical considerations about making large-scale expenditures for a time-limited benefit. Participants question whether spending $100,000 on therapy to extend life for three months is a decision that should be supported with public funding. Other participants question the figure that end-of-life care accounts for 85 per cent of health care costs. Further, they argue that paying more for a 90 year old is quite reasonable since a 90 year old has paid taxes for 40 more years than a 50 year old. Many participants suggest that the Ministry of Health’s 2006 Provincial Framework for End-of-Life Care addresses many of the issues and concerns they raise. Participants recommend that a detailed accountability structure be set up to ensure health authorities are accountable to the Ministry of Health to follow this Framework. Participants emphasize that if we cannot afford to sustain the system, we need to educate the public about realistic expectations related to end-of-life care. The public requires transparent information, such as publicly available itemized costs related to specific procedures, to make informed decisions related to end-of-life care.


Government should take a leadership role in strengthening, recognizing and promoting living wills, right to die, and palliative care. This includes safeguarding the patient's wishes on how and when to die.

− Public Forum, Richmond

Access to End-of-Life Care

Many participants voice concerns regarding the accessibility of end-of-life care. They think that there should be more options for people with limited or no income to go into care, and that rural communities face additional barriers to accessing services. Most agree that end-of life services are not reflective of population needs and that options for end-of-life care should be better communicated to the public and more easily accessible. Some participants see supporting independence for the elderly in a safe environment as another way of recognizing aging and dying as a normal conclusion to life. The majority of participants suggest that what matters most in end-of life-care is avoiding pain, where possible, and providing people with the opportunity to die with dignity. For many participants, this means not prolonging life artificially and providing people with the opportunity to die in their own home with proper support, or in a hospice. Other recommendations from participants include: investing more resources in end-of-life care; increasing the number of dedicated hospice and palliative care beds; improving partnerships with hospice societies and other non-profit organizations that support individuals at end-of-life; and, dedicating education resources for the general public and care providers.

Caregiver Support

Throughout the Conversation, many agree that families who care for a terminally ill family member at home have inadequate support and respite care options. Any education efforts geared at increasing patient awareness of their care options at end-of-life should also target caregivers. Many participants recommend that patient advocates be available to patients and their loved ones to assist when making a decision at end-of-life, or enabling them to stay out of the hospital. Others would like to see caregivers financially compensated for their contribution monetarily, or through tax or pension plan credits.


We've been doing such a good job of keeping people alive that that dying process isn't one of days or weeks. It goes for a long period of time, and it's unrealistic to expect family to provide what is essentially 24-hour nursing care to individuals.

– International Symposium, Vancouver

Health Human Resources for End-of-Life Care

Patients appreciate frank, open and honest discussions with their health care providers when they near the end-of-life. However, many participants are concerned that the current fee schedule for physicians provides a disincentive for taking time to counsel patients on end-of-life issues. Some see multi-disciplinary health care teams, in a setting that allows more time to discuss concerns, as a solution to this issue and there is widespread agreement that health professionals need more training in end-of life care.

Everybody dies, but every death is unique. We have a responsibility in health care to provide every patient with a dignified and compassionate death, affording patients and families a full range of choices and levels of support as they need. We also have a responsibility in health care to ensure that staff are well trained and comfortable with the dying process and [are] supported emotionally, physically and spiritually if needed by their supervisors/co-workers when dealing with dying patients.

– Health Professionals Meeting. Burnaby

Advanced Directives

Good communication of options well in advance of the end-of-life situation is critical to ensuring that families are well-equipped to make difficult decisions. Many participants in the Conversation on Health see advanced directives and living wills as important tools in end-of-life care. They suggest that British Columbians need to be educated on the importance of having clear and well documented end-of-life plans and that there should be teams put in place to offer third party help and consultation with these difficult decisions. Many participants believe that taking responsibility for one’s own end-of-life care will be normalized if physicians take the lead in raising awareness about living wills with their patients.


Conclusion

A number of people would like to see continuation of the discussion about end-of-life, within government, between government and British Columbians, and within families and communities. Many voice concerns that our society has a fear of dying and, as a result, does not discuss it openly. Some believe that medical professionals view death as a failure, and, while technological advances prolong life, there needs to be a discussion between health professionals to determine reasonable treatment. Participants perceive the current medical approach to death and dying as often keeping people alive against their will, showing a preference for quantity over quality of life. They discuss the need for individual choice, focussing on maintaining quality of life through end-of-life.

Every human being deserves to die with dignity, comfort and [they deserve to] feel peaceful in the location of their choice, including respect for language, religion and customs.

– Public Forum, North Vancouver


Death and Dying This sub-theme includes the following topics:

Costs of End-of-Life Care Access to End-of-Life Care and Services Caregiver Support and Preparation of the Patient Human Resources and Doctor-Patient Interactions Advanced Directives and Living Wills

Related Electronic Written Submissions

Sunshine Coast Conversations on Health Submitted by the Women’s Health Advisory Network, the Sunshine Coast Hospital and Health Care Auxiliary and the Seniors Network Advisory Group

The Two Standards of End-of-Life Care in British Columbia Submitted by Providence Health Care

UBC College and Interprofessional Network Submitted by the UBC College of Health Disciplines and the Interprofessional Network of B.C.

Report to the Conversation on Health Submitted by the BC Cancer Agency

A Submission to the Conversation on Health Submitted by the Canadian Cancer Society

Costs of End-of-Life Care Comments and Concerns Funding End-of-Life Care Prolonging Life by Taking Heroic Measures Accountability Cost and Personal Choice • Comments related to funding end-of-life care:

There are insufficient funds set aside for activity planning to ensure end-of-life facilities are more enjoyable.

There is little funding available for those who want to end their life in a comfortable, non-medical environment.


Most of the health authorities have seen funding cuts to end-of life care although there are increasing demands in this area.

As funding has gone directly to health authorities for end-of-life care management, there are different models being developed in each health authority, which does not necessarily address the need to provide the right care, at the right place and at the right time.

• Comments on prolonging life by taking ‘heroic’ medical measures:

The exponential growth in medical knowledge and technology makes it possible to keep more premature babies and the very elderly alive and to treat conditions and diseases that were previously untreatable, resulting in increased costs to the health system.

There are many moral and ethical considerations to take into account, related to large-scale expenditures for limited benefit, if the health care system is to work towards sustainability (e.g. spending $100,000 on therapy to extend life for three months may not be reasonable).

Medical advances have made it possible to prevent death to the point where it is often debatable whether the intervention is doing anything but prolonging the dying process.

• Comments on accountability:

The Provincial Framework for End-of-Life Care does address many of the issues and a more detailed accountability structure must be set up to ensure health authorities are accountable to the Ministry of Health. There must be support for innovation and demonstration projects to ensure we are providing the best care at the right time in the most cost-effective way.

There is a lack of resources in all settings to provide comprehensive end-of-life care (home, facility and hospital).

Many insurance companies are cashing in on the concerns that Canadians have resulting from insufficient funds for their funeral costs.


• Comments on cost and personal choice:

Patients wanting to end life at home must pay for their own drugs.

People should be able to die naturally instead of having money spent to keep them alive against their wishes.

It can be cruel and humiliating to keep dying people alive against their will.

Health care costs for the end-of-life for terminal cases (for example, late-stage cancer) are exorbitant.

• The majority of health care dollars are spent in the last 10 years of life.

• It is too costly to provide 24/7 care in the community.

Ideas and Suggestions Funding End-of-Life Care Prolonging Life by Taking Heroic Measures Accountability Cost and Personal Choice Age and Treatment Priority • Ideas about funding end-of-life care:

There is already a Provincial Framework for End-of-Life Care (May 2006) and there is a good example of end-of-life care in the Hospice House in Prince George. So fund it and get on with it.

Is there a plan for the Government of British Columbia to adequately fund the health authorities so that they may effectively carry out the recommendations in the Framework for End-of-Life Care?

• Ideas about prolonging life by taking ‘heroic’ medical measures:

There are a lot of interventions that we know in our hearts are futile. If we could have the wherewithal to acknowledge that, step back and stop offering these services, then we would have resources that we could regroup.

There is a need to address the ethical issues related to end-of-life care and to determine to what extent our system should perform heroically.

The only time people should have to pay for health care is when someone is diagnosed with a terminal disease. Once diagnosed, health care coverage should stop for that person (aside from procedures and medications needed to ensure


basic comfort for the patient). If they choose to pursue new therapies it should be at their own expense.

We cannot legislate a change to a wiser philosophy but we can vote to limit health care: the technically non-viable unborn need not be born, the life saved by an outrageously expensive treatment need not be saved, the life prolonged by significantly major surgery need not be prolonged, cancerous diseases that threaten our lives need not be defeated.

• Ideas about accountability:

Transparent information, such as public, itemized costs related to specific procedures is needed to make informed decisions related to end-of-life care.

• Ideas about costs and personal choice:

People should have the right to die naturally and this right should be facilitated by increasing home support in recognition of the savings, as far as costs of home care over hospital care.

All people should be organ donors. This would reduce scarcity and would in turn reduce crime related to the need for organs.

People are definitely living a greater number of disability-free years which is excellent for all of us.

• Ideas about age and treatment priority:

We need to decide if we expect and value better and timelier health care, earlier in life and throughout middle age, or, if we want to have better care in our final years. Clearly, our current system cannot offer us both and with an aging population, things are likely to get worse.

Age should not influence decisions made by a hospital or doctor. If health care is a right, then age should not be a factor.

There should be an age limit cut-off for expensive surgery, such as heart bypass.

Take a look at some of the health care systems in Europe, where they offer no publicly funded surgeries for persons over 75.

People are definitely living a greater number of disability-free years which is excellent for all of us.

Form a committee of health care workers to provide a means test for operations. For example, determining the pros and cons of providing a hip replacement for a 90 year old.


• The cost of dying from an illness is often higher than the costs of the treatments needed to survive an illness, particularly in acute care.

• Reduce initial costs related to death and dying, by not having end-of life patients fill acute care beds.

• Tax payers should not have to pay thousands of dollars for the health care of a dying person.

• A funeral benefit, through the Canada Pension Plan, could be provided for everyone who donates a major organ. The consent form could be part of the Canada Pension Plan record and made available, via a database, to all hospitals. This could be financed through the savings brought about by having far fewer people on dialysis etc. This money could only be used for funeral costs and would not benefit surviving relatives. Payment would be forfeit if not spent on funeral costs, and the program would only be in place when there was a dire need for organs and could be instated and dropped as necessary each budget year. Those having signed up would remain on the list until their death and would not have to resign each year.

• Investment must be made to support the infrastructure needed to provide standardized end-of-life care.

Access to End-of-life Care and Services Comments and Concerns Facilities Acute Care Settings • Comments related to accessing end-of-life care facilities:

There are not a lot of options for a person with limited or no money to go into care.

It is difficult to get the right diet for Aboriginal Elders who are dying in facilities.

Our long-term care facilities are full of people in the end stages of life who have no quality of life left, and are often suffering and in a lot of pain.

There are not enough complex care facility beds for end-of-life care.

The oldest of the old in our society are not served well by the current system. The Provincial Framework for End-of-Life Care promises adequate end-of-life care in


residential care but fails to give the health authorities adequate resources to accomplish this. Our older adults with dementia and frailty are some of the most vulnerable people in our society. How we treat them says a lot about what our society values and with our current state of residential care, they are clearly second-class citizens.

The Provincial Framework mentions quality indicators developed by the Canadian Council on Health Services Accreditation specifically for end-of-life care, but the health authorities are not asked to report on these measures. Currently, none of the measures in place will adequately capture the quality of end-of-life care provided to British Columbians in residential care.

• Comments related to access to end-of-life care in acute care settings:

We end up shuttling people into acute care and are missing an opportunity for people to come into an environment that is the more responsive and appropriate for end-of-life.

People are dying in the hospitals because they do not have options/services available.

The busy and generally under-staffed acute hospital setting is not entirely appropriate to meet the holistic and often complex needs of a dying patient or their family.

The Quesnel Hospital has a great end-of-life program.

The Intensive Care Unit in Prince George is amazing in their handling of dying patients.

The fact that Richmond has a Hospice and a Palliative Care Unit is great.

• Rural areas may not always be able to get home care support or volunteers so patients can die at home.

• Doctors and the government of British Columbia appear to want only those people deemed to be no longer valuable to die.

• Starvation is not an acceptable alternative way to end life particularly when more compassionate means are unavailable.

• People are becoming more aware of their choices in end-of life care.

• The current health care system is ill-prepared to meet the ensuing needs of people with end stage chronic illnesses leading to death.


• It can be cruel and humiliating to keep dying people alive against their will.


Ideas and Suggestions Facilities Public Education on Death and Dying Cultural Issues and Personal Choice • Ideas about accessing end-of-life care facilities:

Design end-of-life care facilities providing these services for smaller and rural communities.

• Ideas about public education on death and dying:

Normalize the end-of-life process much like cancer (charity runs, walks, etc.).

There must be better public communication concerning the comfort that end-of-life care can provide. Recognize end-of-life care as a necessary part of health care.

Place more emphasis on dying at home.

Provide outreach and education around end-of-life issues to multicultural communities through ethnic media, associations, churches, or religious groups to ensure that the appropriate and available services are utilized effectively.

Use the media to promote a change in the approach to and understanding of end-of-life.

Direct more resources towards advertising end-of-life services.

Provide education on end-of-life and the services available. There is currently a lack of awareness in the general public. This information needs to be easily accessible and geared towards specific populations.

Teach about issues related to death and dying in schools.

If we cannot afford to sustain the system, then we need to educate the public with regards to realistic expectations related to end-of-life care.

• Ideas about cultural issues and personal choice:

Acknowledge the cultural component of death and dying. There are some cultures where the whole point is to prolong life as long as possible, regardless of quality of life. For others, it is important to die at home among family.

What matters most is the avoidance of pain where possible, and providing people with the chance to die with dignity. This means not prolonging life artificially and providing people with the opportunity to die in their own home with proper support or in a hospice.

Remove the 'no code' option but support peoples’ choices at the end-of-life.


Focus on quality of life, versus quantity and respect the choice of the patient.

Provide quality end of life care for marginalized populations and the homeless, as well as people from various ethnic groups.

Allow ceremonies in facilities during end-of-life care for First Nations peoples.

There needs to be equality in care across communities.

We need to remove religion from the health care system and separate religion from the ethics that guide health care decisions in areas such as abortion and prolonging the life of children with disabilities etc.

Supporting the elderly to maintain independence in safe environments is another way of recognizing ageing and dying as a normal conclusion to life.

• We need to follow through with outcome scales that not only measure where a person died but also assess the quality of life a patient experiences throughout the dying process:

Were pain and shortness of breath controlled?;

Was the patient and their family made aware of all they wanted to know about the illness?;

Was psychological support provided to the patient and family throughout the process?; and,

Was grief support available to the remaining family and friends?

• Hepatitis has to be included in end-of-life planning.

• Establish national standards for home care and hospice palliative end-of-life care delivery programs. These standards will ensure that all British Columbians have access to quality and timely home care services, which will mean improved quality of life, and a dignified death in those situations where death is the only outcome.

• Minimal service level requirements should be defined, and integration between acute and community care is vital. While this would increase access to care and information for cancer patients, their families, and other caregivers, it would obviously help those dying of other diseases.


Caregiver Support and Preparation of Patient for End-of-Life Comments and Concerns Support for Caregivers and Families Death as a Natural Process

• Comments related to support for caregivers and families involved in end-of-life care:

There is inadequate support for families who are caretaking for a terminally ill patient at home.

Do not overlook the extra strain that end-of-life care can place on the spouse/partner, especially if they are elderly.

Family caregivers do not have medical knowledge or experience. They do not know how to access appropriate equipment, methods, practices, services.

In dying, time is one of the most important components. The medical system has no process in place to manage families nor is there time to provide adequate care to family members.

The end-of-life period had grown from weeks to years, increasing the burden on family caregivers.

The Government is downloading end-of-life care to families.

Do not overlook the emotional bond/attachment that caregivers can develop with a person who is terminally ill.

• Comments on death as a natural process:

Death is inevitable, it cannot be prevented, just postponed. It is the dying process we are afraid of. Our culture does not accept dying even if an individual has specifically expressed their wishes.

Physicians are often unwilling to communicate that a patient is dying; some perceived as medical failure.

We do not talk about death enough, although it is a natural process.

If end-of-life care stays within the medical model system, you will not get engagement at a community level.

Medical advances have made it possible to prevent people from dying with major illnesses such as stroke, heart attack or infection, but this does lead to more frail 'survivors', who are living with the chronic consequences of the initial illness that would have killed them previously.

Ideas and Suggestions


Support for Caregivers and Families Death as a Natural Process Support for the Patient Legislation and Regulations for Caregivers and Patients

• Ideas about support for caregivers and families involved in end-of-life care:

When a family member is dying, the focus should be on that person and respect paid to their dying. Do not be afraid to talk to a loved one who is dying, while they are dying. So many people suffer a prolonged death because of the family members left behind.

Invite the family to be part of the process. Provide individual and unique care when a patient is approaching end-of-life. It is not just about the patient, it is also about the family.

Address gender issues in end-of-life care. Historically women have taken on care for family members and this is changing as more women work outside the home.

When a person’s time comes, make it as easy on the family as possible.

There is a need to support family members after the death of a family member.

Explain end-of-life interventions to families.

Establish a consulting service for patients and families to learn about options for end-of-life care.

Families need to become more involved and better educated on death and dying – start in the schools.

Expand grief and bereavement counselling.

Options related to compassionate care leave and financial benefits for caregivers need to be increased.

Roving nurses and home care nurses could be used to help patients and families dealing with end-of-life care.

Respite care has to be available when a family chooses to handle end-of-life care.

• Ideas about death as a natural process:

End-of-life does not need to be negative.

End-of-life care must be about the patient. Strip away the Medicalization of death.

We need to create an atmosphere that allows discussion around death and dying to happen earlier and more often with more active conversations on the issues related to end-of-life.

Society needs to be re-educated that dying is not an illness. Care for end-of-life requires a paradigm shift away from acute care models to acceptance and recognition of the dying process with a publicly funded holistic approach.


• Ideas about support for the patient:

Assign a grief counsellor/case manager/spiritual counsellor to patients to help them navigate the end-of-life care system.

Patients need a social worker or counsellor to speak with immediately upon receiving the news that they are terminal.

Information related to death and dying has to be personalized. It does not work very well to put it in television ads. What you need is someone, whether it is the family physician or another health professional, to sit down with a patient and their family and have a conversation about expectations and options related to end-of-life care.

Everyone dies in a unique way. We have a responsibility in health care to ensure each patient receives a dignified and compassionate death, providing patients and families with a full range of choices and supports as needed.

A ‘life review’ can be a valuable component to end of life care. This ties into a legacy concept and helps people to understand the mortality of their lives, while preparing a legacy for inter-generational understanding. There are some practitioners in hospice societies that are doing this. It is using technology to mark what your life has been and can be a helpful means to validate the life progression.

Make the elderly comfortable in the end do not give them procedures to prolong their lives for a short time.

A vehicle or trailer with a glass top (so the patient can see out but no one can see in) could be used to take patients to their homes or to a ranch to allow them to enjoy the last few hours of their life.

• Ideas about legislation and regulations for caregivers and patients:

Pass legislation related to professional caregivers making end-of-life decisions.

Allow patients with a willing caregiver and in-home support to be administered pain medication when they decide to die at home.

Change Employment Insurance to allow people to take leave to act as a family caregiver.

Make legal estate counselling available for those without families.

• If the person wants to die at home then the following must be available:

professional support i.e. nurses and doctors;

pain management even if the patient lives outside of town (The care giver is not always able to administer proper pain management); and,

continuity in care providers for people using home care or support.


Human Resources and Doctor-Patient Interactions Comments and Concerns Role of Health Professionals

• Comments on the role of health professionals and physicians in end-of-life care:

Doctors often do not want to prolong life.

Medical professionals can view death as a failure and at end-of-life (or what should be the end-of-life), medical professionals can sometimes take over and not allow a person to die even when the person does not want help.

Many physicians find it difficult to broach the subject of dying to patients and relatives.

Many doctors simply shrug questions off or do not take the time to ascertain the patients’ feelings.

Nurses are and doctors already overworked and the demands of end-of-life care can be burdensome.

The current fee schedule for physicians provides disincentives for taking the time to counsel patients on end-of-life issues.

The nurses and doctors make every effort to make sure patients are as comfortable as possible until they pass on. Unfortunately, sometimes people do suffer pain in spite of their best efforts.

Hospital staff members are good at accommodating requests where possible.

It is very hard on professionals when patients die. Often professionals are left with feelings of regret and guilt. If these feelings are not dealt with it can affect how they relate to others.

• The quality of the system is currently dependant on volunteer support.

• It is not an accepted practise to remove death and dying from the medical model.

Ideas and Suggestions Role of Health Professionals Education of Health Care Providers Service Delivery

• Ideas about the role of health practitioners and physicians in end-of-life care:


The physician is in the best position to look down the road and tell the patient and their family what to expect during end-of-life processes.

A lot of it comes down to the differentiation between the science of medicine and the art of medicine. The science of medicine involves treating disease, to do no harm and to try and do everything you can to preserve the life of the individual. The art of medicine is talking with families and having that rapport, that you need to really address the issues and do what is the best, to get the best quality of life for the patient, whether they are aging or in the end of their lives.

At end-of-life doctors should act as advocates to ensure that a patient’s wishes are met.

General Practitioners need to be educated to communicate/hold complex conversations with patients about advanced directives. They should work in collaboration with patients to develop end-of-life scenarios.

Have physicians talk to patients at age 65 to discuss end-of-life options with their family. An ad campaign could help start a light hearted conversation that will get people talking.

Physicians must be more open, honest and compassionate towards their patients.

Patients appreciate frank, open and honest discussions, as well as having a range of options to choose from.

Doctors should not have the power to decide who lives and who dies, who gets what treatment who does not. Obviously they need to have a major input but society needs to have the understanding and ability to set guidelines and to have appropriate expectations.

With regards to premature babies, the medical profession needs to set some boundaries that define the viable point after which a good quality of life for the whole family can be a possibility. Do not leave it to parents to make that decision.

• Ideas about the education of health care providers in end-of –life care:

In end-of-life care there is a need to consider cultural factors and offer alternative care options. The inability to carry out cultural rituals can lead to increased stress on the family members, care providers and patients. Health providers need to be educated in cultural sensitivity.

Educate medical professions in end-of-life care issues and options.

The Ministry of Health has a paper on end-of-life, with recommendations for curriculum changes for the medical community.

An inter-professional approach in the contexts of end-of-life/palliative care and geriatric health care, in rural communities, can provide best practice opportunities for collaborative learning sites for students.

End-of-life care should be a specialty area with its own facilities and expert teams.


There is no clear answer to how end-of-life should be handled; however there are certainly gradients of stability in end-of-life that should perhaps be analyzed. We need more specialists in this field who are at all levels of experience and education.

• Ideas about service delivery:

Having better prognostic skills would help us avoid costly investigations and treatments that do not add to the persons’ well-being. This would also better help us to plan effective care for that person through the end-of-life process.

If we could solve the end-of-life care problem, we would decrease the workload on our existing health/human resources to the point where the problem would be more manageable.

Multi-disciplinary health care teams should be available to patients wanting to go over their end-of-life options in a setting that allows more time to discuss concerns than a short appointment with a General Practitioner would permit. These consultations could be in groups, with those attending having access to web information and other forms of communication, as well as one-on-one communication.

Health providers or health authorities should come to agreement on and implement shared clinical tools for end-of-life.

Medications to speed up the dying process should be available to patients with terminal cancer; do not let them suffer.

What can be done to prevent the abuse of the end of life care system?

In assessing each individual case, what standards are there to compare them to? Are there acceptable qualified lists of standards for end-of life care?

Wait a respectful amount of time before sending out questionnaires related to the satisfaction of surviving families with the end-of-life care services received. Do not carry out exit interviews.

• There should be a separate room in hospitals where doctors can talk to terminally ill patients in private.

• Need patient advocates in end-of-life care, especially for the disadvantaged or disabled.

• Use volunteers more in end-of-life care, particularly in smaller communities.

Advanced Directives and Living Wills Comments and Concerns


Living Wills Advanced Directives

• Comments on living wills:

Doctors can overrule living wills. A Living will does not force doctors to follow patient wishes and since institutions and medical professionals fear liability they are often not adhered to.

The law might take the view that if you did not have a living will, you have consented to everything the system could or would do to you. But generally there is an understanding, that actually the doctor decides what has to happen to the patient, not the family.

Living wills do not necessarily follow a patient to where they are receiving care.

Living wills allow the patient a degree of control over the end of their life.

• Comments on advanced directives:

Do Not Resuscitate orders can place pressure on families. It can be frustrating for families trying to advocate for patients when the doctor no longer involved in ongoing assessment.

There are cultural issues around death, Do Not Resuscitate forms, etc. End-of-life has to be patient/family driven.

Ambulances and paramedics do not always respect advance directives.

There is concern related to legislation for advanced directives.

Even when it is clear that a patient wants nothing but palliative care, you may have to call 911 and go to the hospital, and once there it can be difficult to put the brakes on, ensuring that the patient is comfortable but that heroic measures are not taken.

If potential death happens when a person is not in hospital or documentation is not at hand, heroic measures can be taken, even if the patient has requested that no such actions be taken.

Being able to set out a clear set of wishes and knowing they will be adhered to goes a long way in providing comfort to people. If someone becomes incapable of making their wishes known, it would be comforting to know that their life could be ended mercifully.

The path of decline in cancer is often somewhat consistent. This makes it easier to do the Advanced Care Planning that can help prepare the patient and their family for end-of-life.

The terminology around end-of-life is misleading. In reality, end-of-life care has to start with advanced planning, which ideally takes place long before end-of-life. It's like planning for retirement; you do not plan for it when you are ready to retire.


We allow people to become incapacitated without encouraging them to make decisions about their future when they can.

Ideas and Suggestions Living Wills Advanced Directives

• Ideas about living wills:

Make living wills a common practice. When you go to get a will notarized, you should be asked about a living will.

Change legislation to allow doctors to record end-of-life wishes.

The Government should take a leadership role in strengthening, recognizing and promoting living wills, the right to die, and palliative care. This includes safeguarding the patient's wishes on how and when to die.

Before a person lapses into un-consciousness he/she should legally appoint someone to have power of attorney and make major decisions for them.

Combine end-of-life decisions with estate planning and wills.

There should be a central registry of living wills, with these wishes noted on the individuals’ care card to aid paramedics.

If physicians take the lead in raising awareness about living wills, the idea of taking responsibility for ones own end-of-life care will become a part of life.

Doctors should help their patients prepare living wills and keep advanced directives up to date, revised every five years.

• Ideas about advanced directives:

Do not make advanced directives mandatory, only available, should a person wish to document their health care decisions.

Advanced Directives should be mandatory, with better and earlier communication between all parties.

The Do Not Resuscitate (DNR) system is a mess and is frequently misused, instead, we need to use representation agreements more.

Families should have representation agreements that deal with final health issues.

People need to advocate for representation agreements.

The Intervention Consent Form needs to be updated and patients need to be educated on its contents.

The public and health care workers need education about advanced directives.

Do Not Resuscitate forms and should be made available to every British Columbian.


We need to include the patient and family in decisions and advanced planning, starting at diagnosis.

Information is the key to decision making and the delivery of good data and options well in advance of the end-of-life situation is critical to ensuring that families are well-equipped to make the difficult decisions required.

Carrying our end-of-life wishes stuck to our MSP Card would help to make the system more efficient.

There needs to be some way to inform all the necessary medical disciplines of a patient’s wishes to prevent the performance of heroic measures, for example, a medical bracelet.

People need to be educated to have clear and well documented end-of-life plans. There should be teams trained and put in place so there is third party help and consultation available.

Improve the quality of life of seniors by removing the fear of a slow, painful, undignified death. Allow people the opportunity to make a well informed, thought out, and planned way of ending their life when they come to the point of not wishing to live anymore

Educate people (seminar style) in their options, provide a clear, concise booklet of the options, then have peoples’ wishes recorded somewhere (the CareCard is one possibility) and ensure that doctors offices and hospitals can call up this information quickly and that paramedics out in the field have this information available to them on the spot. These additional costs will pay for themselves in savings by reducing unnecessary care.

There should be a panel of people to make decisions related to the end-of life care of a patient, unless that person has clearly made the decision.

Death and Dying Introduction - health.gov.bc.ca...accessibility of services, need for caregiver support and preparation of the patient for death and dying, as well as health human

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