1. End of life care: What is it?
By :
DR ZAINISDA ZAINUDDIN
Anesthesiologist
Island Hospital

2. -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

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. "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."

11. 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.

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

13. -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

14. 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'.

15. 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 )

16. 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.

17. 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

18. Traditional Goals of
the Medical Profession:
•To cure SOME
•To relieve OFTEN
•To comfort ALWAYS

19. 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

20. 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

21. 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

22. 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

23. 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”

24. 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

25. 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

26. 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

27. 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

28. 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?

29. 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

30. Do not resusitate ( DNR )
Euthanasia
Assisted suicide

31. What the patient needs
from the physician
• LEADERSHIP--someone to guide
them through the process
• PRESENCE
• HONESTY
• INFORMATION

32. 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.

33. Reality: End-of-life care is
Not Optimal today
• Physician skills are suboptimal in:
– Alleviating suffering
– End-of-life communication
• Public partly to blame

34. 5 bioethical principal
AUTONOMY: gives an informed and capable patient the right
o refuse futile medical therapy
NON MALEFICENCE: not to harm the patient
BENEFICIENCE: to promote the good of the patient
JUSTICE: to achieve a fair acces to-and allocation of-limited
esources
DISCLOSURE: providing adequate and truthful information for
competent patients to make medical decisions

35. 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."

36. 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.

37. 
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.