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Both palliative care and human rights are based on principles of - dignity of individual - principles of universality and nondiscrimination Palliative Care is recognized under international human rights law
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.
attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity
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Pain relief Control of physical and psychosocial symptoms Essential drugs for palliative care Care by trained palliative care professionals Receive home-based care when dying and to die at home if desired Spiritual and bereavement care Family-centred care Information about diagnosis, prognosis and palliative care services Withholding and withdrawing treatment Name a health care proxy for decision-making
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Pain relief Control of physical and psychosocial symptoms Essential drugs for palliative care Care by trained palliative care professionals Receive home-based care when dying and to die at home if desired Spiritual and bereavement care Family-centred care Information about diagnosis, prognosis and palliative care services Withholding and withdrawing treatment Name a health care proxy for decision-making
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 worlds population, only accounted for about 6% of the global morphine consumption.
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)
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Pain relief Control of physical and psychosocial symptoms Essential drugs for palliative care Care by trained palliative care professionals Receive home-based care when dying and to die at home if desired Spiritual and bereavement care Family-centred care Information about diagnosis, prognosis and palliative care services Withholding and withdrawing treatment Name a health care proxy for decision-making
Truth is an important value in our lives. Truth-telling in EOL care is not as straight forward because of familys (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
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)
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
EB, Christakis NA: Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med134(12):1096-1105, 2001.
EJ, Daugherty CK: Hitting you over the head: Oncologists disclosure of prognosis to advanced cancer patients. Bioethics 17:142-168, 2003.
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.
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
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
The need to tell the truth must be balanced with the need to do it sensitively Truth telling must meet the patients 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
Pain relief Control of physical and psychosocial symptoms Essential drugs for palliative care Care by trained palliative care professionals Receive home-based care when dying and to die at home if desired Spiritual and bereavement care Family-centred care Information about diagnosis, prognosis and palliative care services Withholding and withdrawing treatment Name a health care proxy for decision-making
Striking a balance between the goals and the benefits of treatment is needed when offering treatment
Unwanted treatment may include:
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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
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: Presidents 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
Life-sustaining treatment often initiated on an emergency basis when patients treatment preferences are unknown.
When life-sustaining treatment are discontinued, every effort should be made to promote comfort and dignity of patients.
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
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 ones suffering?
Euthanasia/Assisted Suicide
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
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
Intent
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Pain relief Control of physical and psychosocial symptoms Essential drugs for palliative care Care by trained palliative care professionals Receive home-based care when dying and to die at home if desired Spiritual and bereavement care Family-centred care Information about diagnosis, prognosis and palliative care services Withholding and withdrawing treatment Name a healthcare proxy for decision-making
Advance care planning (ACP) allows patient to state their wishes and preferences, including the extent of treatment Reduces family/NOKs 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 ones values in life and helps to strengthen relationships
Helps to shape clinical care according to ones 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
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
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.
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