Patient-centered Care At The End Of Life

Patient-Centered Care at the End of Life José Ramírez Rivera MD. MACP. Professor of Medicine U. of Puerto Rico [ ad honorem ] Universidad Central del Caribe Federación Puertorriqueña de Bioética

Introduction Everyone of us will die ❂ A few of us suddenly [10%]. ❂ Most of us after a long period of illness with gradual deterioration (90%). ❂ The last hours of our lives may be some of our most significant. ❂

Professional Principles ❂ Altruism ❂ Responsibility ❂ Sense of duty ❂ Honor:

honesty, truth telling ❂ Respect for the person

We are not: ❂ Diabetics ❂ Epileptics ❂ Endocrinology or neurology

patients

We are: ❂ Human beings:

assaulted by problems that threaten who we are [ or who we think we are ]. ❂ Concerned by symptoms which frequently will scarcely qualify as an illness.

We become: ❂

An assortment of problems and symptoms that only a well trained physician can put in context and help solve.

Patient- centered Medicine-1 ❂

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Medicine should not attach itself to a single model of action to solve the physical (and existential!) problems that knock at its door. It should identify adroitly the origin of the discomfort of each particular patient. If the patient is a “latino”, design a treatment which responds to the psychological and existential needs of that “latino”

Patient- centered Medicine-2 ❂ Medicine is

a contrived encounter between two human beings: One with power and one with needs. ❂ It is the difficult function of a good physician to fully identify those needs and to use the resources at hand to restore wellbeing and/or to alleviate suffering.

Patient-Centered Medicine-3 ❂ The clamor for a medicine that

responds to unattended needs identified by the patient is so great that 50% of patients seek attention and advice from neighbors, passersby and charlatans with a meager knowledge of the body and the mind .

Patient-Centered Medicine-4 ❂ Society does not question the use of

complex and expensive technology, which properly applied restores people to a useful and significant life. ❂ Society questions use of this technology to prolong the stressful process of dying.

Patient-Centered Medicine at the end of life ❂ When the end of life is perceived as a

torturing experience and when a painful end is coupled with excessive and useless expenses, there is legitimate doubt about the good judgement of the profession.

Defining Death 1968 Ad hoc committee at Harvard Med School ❂ 1981 Presidential Commission: ❂ “Study of Ethical Problems in Medicine” ❂ 1975 Karen Quinlan ❂ 1990 Nancy Cruzan ❂ 2005 Terri Schiavo ❂

Defining end of Life 1959 Kübler Ross at a Yale Symposium: Dying are heavily sedated, still in pain, endlessly tested; bereft of emotional, social and spiritual support. ❂ 1960 Dr. Cecily Saunders established the first modern hospice—St Christophers– in London. ❂

Defining end of Life ❂

1965 Dr. Saunders comes to Yale as visiting professor invited by Florence Wald, Dean of Graduate School of Nursing:

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“Care of the dying patient is care for the living: respect, empathy, compassion and loving care are appropiate”

Defining end of Life ❂

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1968 F. Wald spends six weeks in St. Christopher's Hospice in London and then returned to Yale. 1968 F. Wald leaves her deanship to dedicate herself to the development of the hospice program. 1974 The Connecticut Hospice and an inpatient hospice at Yale Medical Center. At present, 3,200 hospices nationwide

Defining end of Life Elizabeth Kübler-Ross (1926-2004] Psychiatrist ❂ 1969 “On Death and Dying” ❂

Sherwin B Nuland Yale ’55 ❂ Professor of Surgery and Bioethics [Yale] ❂ 1994 “How We Die” (Knopf, New York) ❂

1969 “On Death and Dying” by Kübler-Ross ❂

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Denial - The "T his can 't be real" st age .: "I'm not here, This isn't happening." Ang er - The "W hy m e? " st ag e .: "How dare you do this to me?!" (either referring to God, the deceased, or oneself)

1969 “On Death and Dying” Kübler-Ross ❂

Ba rga ini ng - Th e " If I d o th is, y ou’l l do th at" sta ge .: "Just let me live to see my son graduate."

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De pr essi on - The " De fea ted" sta ge .: "I can't bear going or putting my family through this."

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Accep tanc e - The " Thi s i s goi ng to happen" sta ge .: "I'm ready, I don't want to struggle anymore."

Patient-centered care at the end of life requires that we: 1. Promote Advanced Care Planning 3. Learn how to communicate bad news 5. Manage pain effectively

Patient-centered care at the end of life requires that we: 1. Treat effectively the adverse effects of opioids. 2. Prevent and treat delirium. 3. Learn and teach when it is appropriate to withhold or withdraw treatments.

Promote Advanced Care Planning 1. Obtain the patients wishes when or before terminal illness comes. 2. Encourage the identification of the person who is acquainted with his values and will follow his wishes when he can no longer make decisions[ his medical proxy]

Promote Advanced Care Planning • Encourage his making known his wishes to those who surround him . • Incorporate the designated proxy in the process of making medical decisions.

How to Communicate Bad News 1-Be sure you have all the facts. ❂ It is a special situation: handle it specially--may be at the beginning or the end of working rounds. ❂ Determine who else the patient would like to be there. Direct yourself mostly to the pt. ❂ Sit at the same level: human to human. ❂

How to Communicate Bad News 2-Establish how much the patient knows and how much he wants to know: ❂ What were his suspicions and his concerns? ❂ What actions has he taken before coming to see you? Did he have other consultations or treatments which he had not previously mentioned? ❂

How to Communicate Bad News 3-Encourage a dialogue. ❂ Do not deliver all the information at once. ❂ Check understanding. ❂ Do not minimize the severity of the situation. Give a reasonable prognosis. ❂ Take a position as to what is the appropriate action. ❂

How to Communicate Bad News 4-Support the patient and his family in the expression of their feelings: ❂ What worries you the most? ❂ Is there someway I can help? ❂ Would you like me to explain this privately to your….[ daughter/son/significant other?] ❂ Reassure them that their responses are appropriate….[offer tissues, water? Juice?] ❂

How to Communicate Bad News 5-In PR., it is culturally acceptable to hug or touch the patient in a reassuring manner. ❂ 6-Share thoughts as to the appropriate steps to be taken in harmony with his or her values and leave an open door for further plans . ❂ 7-Discuss potential sources of emotional and practical support . ❂

Spirituality Acknowledge its importance. ❂ Accept the different ways people seek to fulfilled the purpose of their lives. ❂ Be aware of the major cultural and religious traditions. ❂ Be respectful of nontraditional methods of healing. ❂

Manage Pain Effectively ❂ It is the symptom most feared by

patients and their families. ❂ Patients and physicians are generally aware that pain is poorly evaluated. ❂ It is, frequently, not effectively treated.

Manage Pain Effectively ❂ Uncontrolled pain and suffering

should be considered and emergency. ❂ In a 24 h . period it is not unusual an increase of 25-50% of the initial dose of narcotics for moderate pain.

Pain in the terminally ill-2 ❂ A competent physician should find the

means to prevent or alleviate pain. ❂ A US citizen may not demand from a physician a drug to commit suicide but may take an M.D to court for failing to relieve his pain.

Legal triumphs for control of pain ❂

1- In Jan 2006 the US Supreme Court affirmed the 9th Circuit Court of Appeals ruling of 2004. The FDA has no power to regulate the legitimate prescription of opiates [to interfere with medical practice] 2- In September 2006:FDA will allow writing opiate prescriptions for 90 days for patients in which it is indicated.

Wholesale cost of drugs of three groups of 18 patients in a hospice. Dr ug U Cost [ $] Cos t 1 mo [$ ]. -Fe ntany l 10 0 6 2.38 62 3. 18 (5 p at hch es] ❂ Perc ocet 32 5/5 1. 16 1 04 .00 ❂ Dilau did 4 m g 1. 00 90 .0 0 ❂ Ac et /cod 30 0/30 0 .68 61. 20 ❂

Delirium ❂

It occurs in 28 % to 38 % of patients at the end of life.

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It may cause as much distress as pain.

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It may be a predictor of approaching death.

Delirium: Recognize and Treat ❂ To improve patient’s comfort ❂ To optimize his quality of life ❂ To enhance the leave -taking

process for patient and family

Psychological Needs Identify and treat anxiety and depression. ❂ Provide psychiatric consultation and suggest psychological support when appropriate. ❂ 27 % of hospices in England lack this important support , there is precious little psychological support in the United States. ❂

Withholding or Withdrawing Life -Sustaining Treatments It is ethical and medically appropriate at the end-of-life. ❂ Intravenous fluids,ventilators, dialysis, transfusions,antibiotics, diagnostic tests, cardiopulmonary resuscitation, ventilators may be withheld or withdrawn. ❂

Withholding or Withdrawing Life- Sustaining Care It is a decision/action that allows the disease to progress in its natural course. ❂ It challenges physicians to be excellent communicators. ❂ It may be an appropriate response to the requests of a well-informed patient or his family or to advance directives. ❂

Formulate a good plan: Confirm that the diagnosis and the goals of treatment are clearly understood by the patient and his surrogates. ❂ Discuss reasonable therapeutic options: Make clear that comfort measures only means a cessation of all curative measures. ❂ Obtain a meaningful informed consent ❂

Formulate a good plan-2 ❂

Be sure the plan is clear to all parties

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Orient other professionals [consultants, nurses!!] in regard to the plan to avoid the generation of conflicting messages.

As death approaches: Extra visits to the sick room and additional clarifying contacts with the family are in order. ❂ Encourage patients to die at home when there are resources to support the patient in the dying process. ❂

As death approaches: If the patient chooses to die at home: ❂ Coordinate hospice care. ❂ , some physicians find useful at least one home visit : To assess physical and emotional status and effects of medication and to provide the family emotional support. ❂

Annals of Internal Medicine January 1, 2002 In the January 1, 2002 issue of Annals of Internal Medicine, Richard Parker narrates his experiences caring for 95 dying patients during his 12 years of practice in Boston. ❂ A relationship established over time among the patient, physician and the patient’s family allows for a “good death”. ❂

Parker (Annals 01/01/02) views the end of life as: ❂

“Not

as a failure for the physician or for the patient,but as a valuable opportunity for growth, insight and closure”.

Richard Parker concludes: ❂“I have learned that caring

for patients in the last chapter of their lives is the most important part of my job”.

Do not look to the law. Follow your professional conscience

❂“Do unto others as

you would like to be done unto you.” [Mathew 7,12]

Do not look to the law. Follow your professional conscience ❂Hippocrates in his first

aphorism is very explicit:: “ Life is short, art is long ; opportunity fugitive ; experience delusive (engañosa) and judgement difficult..

Hippocrates first aphorism continues: ❂“It is the duty of the physician

not only to do that which belongs to him, but likewise to secure the cooperation of the sick, of those who are in attendance and of all the external agents.”