End of life care

End of life care: What is it?

By :DR ZAINISDA ZAINUDDINAnesthesiologist Island Hospital

-In medicine, end-of-life care refers to medical care -not only of patients in the final hours or days of their lives, -but more broadly, medical care of all those with a terminal illness or terminal condition that has become advanced, progressive & incurable. wikipedia

The case began with a medical tragedy that befell Rasouli, 60, just five months after he and his family immigrated to Canada from Iran in 2010.

The retired engineer underwent surgery at Toronto's Sunnybrook Health Sciences Centre in early October of that year to remove a benign brain tumour. In the days after the operation, Rasouli developed an infection in his brain that destroyed tissue in multiple parts of the organ.

For more than a year afterward, Rasouli was deemed to be in a persistent vegetative state. Earlier this year, his condition was upgraded to minimally conscious, one of the things giving his family hope that Rasouli will keep getting better.

During her visits, she tries to make him more aware and asks him to do simple tasks, like giving her the thumbs-up sign. If he is awake and well-rested, she said, he performs well.

How this case comes to be one considered by the Supreme Court stems from the fact that Rasouli's brain damage is so profound that his body doesn't know it needs to breathe. For the past two years, he has been on a ventilator, a machine that breathes for him. Attempts to wean him off the ventilator have failed.

Two of his physicians, Dr. Brian Cuthbertson and Dr. Gordon Rubenfeld, believe it's in Rasouli's best interest to end his current treatment regime and switch to a program of palliative care.

Some might feel that course of action would, under the law, be defined as actively hastening a death. But Bernard Dickens, professor emeritus of health law and policy at the University of Toronto, disagrees.

"There is a difference between killing and letting die. This is letting die. It's the natural conclusion of life," he said. "And in that sense, there is nothing unnatural or nothing wrong about it. The difficulty is the family members — sometimes patients themselves — are sometimes not willing to accept that."

Rasouli's wife, Parichehr Salasel, is his surrogate decision-maker. A licensed physician in Iran, she has refused to consent to starting her husband on a palliative care track. Salasel told Roumeliotis that the doctors who say her husband will not get better are entitled to their opinion, but she does not agree with them and will keep fighting for her husband.

Range of decisions

- questions of palliative care, -patients' right to self-determination (of treatment, life), -medical experimentation,

-the ethics and efficacy of extraordinary or hazardous medical interventions,-the ethics and efficacy even of continued routine medical interventions.-the allocation of resources in hospitals and national medical systems

Hippocrates (460-361B.C.) stated that the role of medicine was “ to do away

with the suffering of the sick, to lessen the violence of their disease, and to

refuse to treat those who are overmastered by their diseases, realising

that such cases, medicine is powerless'.

Medical futility: No gold standard or formal consenses 3 criteria often used to establish this -terminal -irreversible disease -with imminent death ( within days

to week )

Meaningful survival The American Thoracic Society ( ATS )

guidelines defines a life sustaining intervention as futile if reasoning and experience indicate that it would be highly unlikely to result in meaningful survival for the patient.

Meaningful survival Refer to quality and duration of life

that would have value to the individual If tx merely preserves permanent

unconsciousness ( i.e completely lacking cognitive and sentient capacity ), prolongs dying or cannot end dependence on intensive medical care, the tx is regarded as no value for such a patient

Traditional Goals ofthe Medical Profession:

•To cure SOME

•To relieve OFTEN

•To comfort ALWAYS

The “Culture” of Medicine

Focus on “curing” Public expects miracles So does physician:

– Death of patient viewed as a personal and / or professional failure by M.D.

Perception of public and medical community:– Skills in palliative care are not highly valued

Care Beyond Cure:Palliative Care

The treatment of symptoms or suffering caused by an illness without attempting to cure the underlying illness

Usually done when curative therapy is not possible

Care Beyond Cure: Palliative Care: focus on

comfort. Dimensions: Symptom management (e.g.,

control-ling pain, nausea, improving breathing)

Physical therapy Counseling for person and family Spiritual support

Training Present and Future Doctors in End-of-life Care

Symptom management Communication re: disease

outcomes, establishing goals of care…

Legal and ethical issues Cultural awareness Recognizing social and spiritual

suffering Hospice care – referring and

working with the team

How can we make things better?Understand that

Palliative treatment that allows a dignified and gentle death of a terminally ill patient is a medical accomplishment of considerable merit, not a “failure”

Skills Needed for Effective End-of-Life Care… cont’d

Working with hospice…

The concept of hospice Hospice eligibility The hospice team The last hours of living

Skills Needed for Effective End-of-Life Care… cont’d

Ethical and legal issues Advance directives Healthcare agents, surrogates State laws regarding end-of-life care Withholding/withdrawal of treatment Medical futility Physician assisted suicide Recognizing conflict of interest

Skills Needed for Effective End-of-Life Care… cont’d

Psychosocial, cultural and spiritual issues…

Empathetic approach Principles of grief, mourning and

bereavement Recognizing spiritual crises Cross-cultural awareness

Skills Needed for Effective End-of-Life Care… cont’d

Effective communication techniques…

Breaking bad news Setting treatment goals Discussing DNR orders Recommending hospice care Conducting a family conference Personal awareness and self-care

Skills Needed for Effective End-of-Life Care… cont’d

Prognostication skills When is it time to change focus from

disease targeted treatments to comfort focused treatments?

Foregoing life support therapy ( FLST )

-processes according to which medical interventions either witheld or withdrawn from patients with the expectation that they will die as a result

Do not resusitate ( DNR )

Euthanasia

Assisted suicide

What the patient needsfrom the physician

• LEADERSHIP--someone to guide them through the process

• PRESENCE• HONESTY• INFORMATION

The Challenge of End-of-Life Patient Care

Conversely, sub optimal delivery of modern techniques of end-of-life care can result in psychological and physical agony for the patient and loved ones, and a sense of failure and frustration on the part of the physician.

Reality: End-of-life care is Not Optimal today

• Physician skills are suboptimal in:

–Alleviating suffering

–End-of-life communication

• Public partly to blame

AUTONOMY: gives an informed and capable patient the right to refuse futile medical therapyNON MALEFICENCE: not to harm the patientBENEFICIENCE: to promote the good of the patientJUSTICE: to achieve a fair acces to-and allocation of-limited resourcesDISCLOSURE: providing adequate and truthful information for competent patients to make medical decisions

5 bioethical principal

JR , age 60, suffered from end-stage chronic obstructive pulmonary disease. Before the progression of her condition, Ms. JR was known for her charm, elegance, and love of dancing. She had an adoring family and many friends.

Over the past year she was hospitalized frequently for respiratory and other problems. Each time her condition was more complicated and her stay longer. During her final admission she experienced respiratory failure and was placed on a ventilator. The next day she developed renal failure; hemodialysis was begun. Total parenteral nutrition (TPN) had been started on admission because of dysphagia. Several days later she developed severe generalized edema; her extremities swelled to twice their normal size, with the skin stretched tight and fluid oozing from the pores. Ms. Riordan's eyes were swollen shut, her face beyond recognition.

When family members were approached about signing a "do not resuscitate" order, they refused, although it was clear Ms. JR was dying. They insisted the physician do everything possible, saying, "She's a fighter. She got through the last crisis, and she'll do it again!" The physician said he would resuscitate her one more time, despite the protests of two nurses who felt that would be torturing the patient.That afternoon Ms. JR suffered cardiac arrest, and a full code was called. The physician continued cardiopulmonary resuscitation (CPR) for 45 minutes, until the nurse persuaded him to stop. Later that day a family member told the physician, "I wish we hadn't asked you to do that. The way she died was horrible. I'll never forget it."

Michael Thomas, age 79, had been a practicing physician and teacher for more than 40 years. Shortly after his diagnosis of advanced bowel cancer, he insisted his physician and family promise that no feeding tubes or IVs would be used when he was in the terminal stage. "No heroics!" he insisted. His wishes were honored. As his condition declined, palliative care was instituted to keep him comfortable.

A few days before his death he surprised his wife by whispering, "If this is death, it is peaceful, happy, and painless. Tell them." She asked, "Tell who, the family?" He nodded yes. At the memorial service, his son said that his father had remained a teacher even at the end, letting everyone know that dying can be a peaceful, natural process. The family and friends took great comfort from his message.

Two real-life scenarios, two different outcomes.

And two families left with very different memories.

"How people die remains in the memories of those who live on,"

said Dame Cicely Saunders, founder of the first hospice at St. Christopher's in London.