Patient Rights in

EOL Care

Dr Wu Huei-Yaw

Dept of Palliative Medicine

Tan Tock Seng Hospital

Singapore

Human Rights Heroes

Human Rights Heroine in

Palliative Care

“You must matter

because you are you,

and you matter until the

last moment of your life.

We will do all we can,

not only to help you die

peacefully, but also to

live until you die.”

-Dame Cecily Saunders

Palliative Care and Human Rights

Both palliative care and human rights are based on principles of - dignity of individual - principles of universality and non-discrimination

Palliative Care is recognized under international human rights law

International Bill of Rights

Comprises the UN Declaration of Human Rights, International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social and Cultural Rights (ICESCR)

Under article 12 of the ICESCR and article 7 of the International Covenant on Civil and Political Rights, countries are obliged to take steps to ensure that patients have access to palliative care and pain treatment.

The Committee overseeing the ICESCR

affirmed the importance of “attention and

care for chronically and terminally ill

persons, sparing them avoidable pain and

enabling them to die with dignity”- general

comment 14 para 25.

Right to Palliative/Hospice Care

“attention and care for

chronically and terminally ill

persons, sparing them

avoidable pain and

enabling them to die with

dignity”

The International Association for Hospice & Palliative Care (IAHPC) and the

Worldwide Palliative Care Alliance (WPCA) have joined forces to develop a

Joint Declaration and Statement of Commitment to recognize palliative care

and pain treatment as a human rights.

“Patients have the right

to relief of their suffering

according to the current

state of knowledge” and

“Patients have the right

to humane terminal care

and to die with dignity”

Right to Palliative/Hospice Care

Patient’s Rights in EOL Care

The right to:

a. Pain relief

b. Control of physical and psychosocial symptoms

c. Essential drugs for palliative care

d. Care by trained palliative care professionals

e. Receive home-based care when dying and to die at home if desired

f. Spiritual and bereavement care

g. Family-centred care

h. Information about diagnosis, prognosis and palliative care services

i. Withholding and withdrawing treatment

j. Name a health care proxy for decision-making

Patient’s Rights in EOL Care

The right to:

a. Pain relief

b. Control of physical and psychosocial symptoms

c. Essential drugs for palliative care

d. Care by trained palliative care professionals

e. Receive home-based care when dying and to die at home if desired

f. Spiritual and bereavement care

g. Family-centred care

h. Information about diagnosis, prognosis and palliative care services

i. Withholding and withdrawing treatment

j. Name a health care proxy for decision-making

Accessibility to Palliative/Hospice Care

58 million people die every year around the world

According to WHO, 60% of those dying would have benefited from palliative care to alleviate pain and suffering

Only a minority of those in need received palliative care. (In India, only about 1% are able to access palliative care)

According to 2004 data published by the International Narcotics Board, 6 nations accounted for 79% of medical morphine consumption.

Developing countries, which represent 80% of the world’s population, only accounted for about 6% of the global morphine consumption.

Levels of Palliative Care Development

Developed by the International Observatory on End of Life Care for the Worldwide Palliative Care Alliance, commissioned by the NHPCO (US) and the Help the Hospices (UK)

Patient’s Rights in EOL Care

The right to:

a. Pain relief

b. Control of physical and psychosocial symptoms

c. Essential drugs for palliative care

d. Care by trained palliative care professionals

e. Receive home-based care when dying and to die at home if desired

f. Spiritual and bereavement care

g. Family-centred care

h. Information about diagnosis, prognosis and palliative care services

i. Withholding and withdrawing treatment

j. Name a health care proxy for decision-making

Right to Receive Truthful Information (1)

Truth is an important value in our lives.

Truth-telling in EOL care is not as straight

forward because of family’s (and healthcare

providers’) discomfort and the central role of

family in decision making process.

The decision “to tell” or “not to tell”(omission) the

truth is based on the ethical principles of

“respect for autonomy” and “beneficence”

Right to Receive Truthful (2)

Collusion to withhold information on

diagnosis or prognosis

- not wanting to take away hope

- fear of causing hurt

- not able to handle the emotions that

follow (emotional vulnerabilities)

Right to Receive Truthful Information (3)

Studies have shown that doctors often do not give cancer patients honest and truthful information about prognosis and treatment options even though the latter say they wanted it.1-3

Most cancer patients never received information from their physicians about their prognosis.4

The lack of information is associated with worse quality of care and worse QoL, not only for patients but the surviving caregivers.5

1Lamont EB, Christakis NA: Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med134(12):1096-1105, 2001.

2Gordon EJ, Daugherty CK: ‘Hitting you over the head’: Oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics 17:142-168, 2003.

3Numico G, Anfossi M, Bertelli G, et al: The process of truth disclosure: an assessment of the results of information during the diagnostic phase in patients with

cancer. Ann Oncol 20:941-945, 2009.

4Koedoot CG, Oort FJ, de Haan RJ, et al: The content and amount of information given by medical oncologists when telling patients with advanced cancer

what their treatment options are. Palliative chemotherapy and watchful-waiting. Eur J Cancer 40:225-235, 2004.

5Wright AA, Zhang B, Ray A, et al: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement

adjustment. JAMA 300:1665-1673, 2008.

Right to Receive Truthful Information (4)

Costs of collusion

- loss of trust in healthcare professionals

- loss of opportunities for proper closure

(unfinished business, healing of relationships)

- loss of opportunities for open communication

between patients and their loved ones (saying

“goodbyes”, addressing concerns)

Right to Receive Truthful Information (5)

Honesty about prognosis, treatment benefit, and

curability did not decrease hope1,2

Parents of children with cancer who received

more prognostic disclosure remained more

hopeful, even when the news was bad3

1 Smith TJ, Dow LA, Virago E, et al. Oncology 24:6, 2010 2 Lin CC, Tsai HF, Chiou JF, et al. Cancer Nurs 26:155-160, 2003 3 Mack JW, Wolfe J, Cook EF, el al. J Clin Oncol 25:5636-5642, 2007

Right to Receive Truthful Information (6)

The need to tell the truth must be balanced with the need to do it sensitively

Truth telling must meet the patient’s need at that particular time and according to his/her circumstances

“For some, this will be the full truth, if that is what is asked for, while for another, it may be a graded offering of truth which never approaches full disclosure, if that would not be welcome. The cue to how far one should go will usually be obtained from the patient, if signs are looked for, as one feels the way gently ahead.”- Brian Pollard, physician

Patient’s Rights in EOL Care

The right to:

a. Pain relief

b. Control of physical and psychosocial symptoms

c. Essential drugs for palliative care

d. Care by trained palliative care professionals

e. Receive home-based care when dying and to die at home if desired

f. Spiritual and bereavement care

g. Family-centred care

h. Information about diagnosis, prognosis and palliative care services

i. Withholding and withdrawing treatment

j. Name a health care proxy for decision-making

Right to Forego

Life-Sustaining Treatment (1)

Striking a balance between the goals and the benefits of treatment is needed when offering treatment

Unwanted treatment may include: - Administration of intravenous antibiotics to treat recurrent

sepsis in a terminally-ill patient

- Artificial hydration and nutrition in the presence of dysphagia in a patient with advanced dementia

- Palliative chemotherapy for a patient with metastatic cancer and prognosis of short months

- Life-saving but high-risk procedures

eg. amputation of a gangrenous foot in a patient with poor functional status and multiple co-morbidities

- Transfusion of blood products

Right to Forego

Life-Sustaining Treatment (2)

Need to ensure that patients understand the following

points:

1. the current medical status, including its likely course if no treatment is pursued

2. the interventions that might be helpful, including the likelihood and effect of associated risks and benefits; and

3. a professional opinion as to the best alternative

Above information essential to allow patients to assess

the options realistically and to choose the treatment most

consistent with their own values and goals

Ref: President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and

behavioural Research: A Report on the Ethical, Medical and Legal Issues in Treatment Decisions,

March 1983

Right to Discontinue Treatment (1)

Life-sustaining treatment often initiated on

an emergency basis when patient’s

treatment preferences are unknown.

Right to Discontinue Treatment (2)

When the burden of treatment outweighs its benefits

When the outcome of treatment is no longer/not consistent with the established goals of care

When treatment is not beneficial (eg. in reducing suffering) and only serves to prolong the dying process

Right to Discontinue Treatment (3)

When life-sustaining treatment are

discontinued, every effort should be

made to promote comfort and dignity of

patients.

Ethics of

withholding and withdrawing treatment

No difference between the two; although withdrawal often evokes stronger negative emotions

Well-considered refusal of treatment ought to be respected, even if treatment is beneficial to patient:

- non-consensual intervention invading the integrity of a person

- competent person considered as best judge of his own interests

Patient’s right to

euthanasia/assisted suicide

Is it acceptable?

Euthanasia/Assisted Suicide

Is it the right of patient to be granted the wish

for euthanasia or assisted suicide?

What is the underlying reason for the request?

What is fundamentally wrong in asking for

euthanasia to end one’s suffering?

Euthanasia/Assisted Suicide

Requests to end one’s life can arise in situations of: - Intractable pain

- Feeling of helplessness/hopelessness (loss of control)

- Feeling of self-worthlessness (loss of dignity)

- Inability to accept the state of total dependence

- Being a burden to family/caregivers

Often an outcry for help because of an

unidentified problem or failure on the part of healthcare workers to address the problem (eg. unrelieved pain)*

*Saunders C. Voluntary euthanasia (editorial). Palliative Med 6:1-5, 1992

*Zyclicz Z. ‘Death on request’ and dutch euthanasia policy. Progress in Palliative Care 3(2): 43-44, 1995

Concerns Among Healthcare Providers

Most physicians regard this as morally unacceptable and a violation of patient-physician relationship.

Acceptance of euthanasia/physician assisted suicide negates societal commitment to palliative and hospice care.

Potential for abuse against the vulnerable group eg. elderly and disabled*

*Asch D. The role of critical nurses in euthanasia and physician-assisted suicide.

NEJM 334:1374-79, 1996

What is the difference between

euthanasia/assisted suicide and

withholding/withdrawing treatment?

Intent

Patient’s Rights in EOL Care

The right to:

a. Pain relief

b. Control of physical and psychosocial symptoms

c. Essential drugs for palliative care

d. Care by trained palliative care professionals

e. Receive home-based care when dying and to die at home if desired

f. Spiritual and bereavement care

g. Family-centred care

h. Information about diagnosis, prognosis and palliative care services

i. Withholding and withdrawing treatment

j. Name a healthcare proxy for decision-making

Advance Care Planning

Advance care planning (ACP) allows patient to state their wishes and preferences, including the extent of treatment

Reduces family/NOK’s burden of having to make difficult medical decisions when patient becomes too ill to communicate his/her preferences

Gives patient the peace of mind that undesired treatment will not be administered against his/her wishes

Effective ACP

Allows significant others to understand one’s values in life and helps to strengthen relationships

Helps to shape clinical care according to one’s choices eg. artificial nutrition/hydration, CPR/mechanical ventilation

Allows one to decide who should be the surrogate decision-maker when one is no longer able to make decisions

Allows one to indicate the preferred place of care (when more disabled) and place of death

Right to have ACP honored

Advance care plans, other than the advance (medical) directives, are not legally-binding

Possibility of ACP not being honored:

- Objection of significant others

- ACP not communicated to significant others

- ACP not followed through because of breakdown in communication between healthcare providers across different care settings

Conclusions

Palliative care is a basic human right.

The accessibility to palliative care for patients and family members facing the diagnosis of life-limiting illness in many parts of the world is still very limited or non-existent.

Patients at the end of life have the right to be treated with dignity in relation to their diagnosis, treatment and care and with respect to their culture and values.

We need to be advocates of

our patient’s rights

“…in end of life care, we do

not have a vocal

constituency: The dead are

no longer here to speak ,

the dying often cannot

speak, and the bereaved

are often too overcome by

their loss to speak.”

- Harvey Chochinov

Thank You