End of Life and Palliative Care

How Americans died in the past Early 1900s Average life expectancy 50 years Childhood mortality high Adults lived into 60s In the early 1900s many people died of infectious diseases. Childhood mortality was high, but if you survived childhood, most adults lived into their 60s. Infectious diseases have been brought under control with antibiotics and in many parts of the world AIDS is a chronic disease.

How Americans died in the past Prior to antibiotics people died quickly Infectious disease Accidents Medicine focused on caring, comfort Nursing care in the home Sick cared for at home Few remedies were available to extend life. Ca.ring and comfort were the tools of medicine. Nursing, following the example of Nightingale focused on maximizing the environment to promote health and healing. People died at home. Even today most will prefer to die at home, but most die in the hospital or nursing home.

Medicine’s shift in focus.. Science, technology, communication Marked shift in values, focus of North American society Death denying Value productivity, youth, independence Devalue age, family, interdependent caring Popular culture focuses on youth, beauty, independence. Worth is based on productivity.

Medicine’s shift in focus.. Potential of medical therapies fight aggressively against all illness, death prolong life at all costs Improved sanitation, public health, antibiotics, other new therapies Death now the enemy Sense of failure if patient not saved New therapies abound. Aggressive intervention has replaced comfort care in the face of life threatening illness. Modern medicine does succeed in many instances. It succeeds in prolonging the illness. Quality of life is not consistently assured with cure or treatment.

End of Life in America today Modern health care few cures longer life with chronic illness dying process prolonged Antibiotics and sanitation prevent many premature deaths today. The focus on treatment today is on management of chronic illness. Death has not been conquered. One birth, one death. 100% of us will die.

Protracted life threatening illness More than 90% will experience: predictable steady decline with relatively short terminal phase slow decline punctuated by periods of crisis Few will die suddenly of MI, accident. Most will have a protracted life threatening illness like cancer, with a predictable steady decline with a short terminal phase. Others will have a slow decline punctuated by periods of crisis, eg., CHF, COPD, DAT

Sudden death from an unexpected cause Health Status Death Time

Steady decline, short terminal phase Health Status Death Time

Slow decline, periodic crisis, sudden death Health Status Financial issues associated with care giving in this scenario are significant. Studies indicate 20% of families quit work to care for a family member. Evidence suggests 30% lose life savings caring for ailing family members. The percentage may be even higher with one study showing 40% of family members caring for someone with cancer became impoverished providing the care. Financial considerations may prohibit some family members from caring for their loved one at home. Crises Death Time

Cost of Dying (14:20) http://www.youtube.com/watch?v=F6xPBmkrn0g

Symptoms, suffering Fears, fantasy, worry Multiple physical symptoms 9.7 - 13.5 average Psychological distress Social isolation Caregiving Financial pressures Past experiences, media, fears, and fantasies often heighten the anxiety about death. Patients and families worry symptoms won’t be managed, they will lose function and control. They wonder who will provide care, how it will be paid for, what dying will be like, what comes afterward. Most patients with life threatening illness can expect multiple physical symptoms often concurrent with psychological, social, spiritual distress. This all leads to the patient and family sense of suffering and reduces the quality of life for the patient and the family. Some symptoms may be from the disease, many are the result of treatment. Pain, nausea, vomiting, constipation, and breathlessness are all significant physical symptoms. With weight loss and fatigue, functional decline occurs. For many, the loss of independence is a source of considerable suffering. Anxiety, depression, worry, fear, sadness all add to the burden of dying In one study, 40% of dying patients were worried they would be a burden to the family. Social isolation is common, inspite of the fact that most of us live in urban areas. 90% of Americans believe it is the responsibility of the family to provide for the dying person. The care giving often falls to the women, who may be unskilled or lack resources to provide and pay for care.

Coping Strategies Vary among individuals May become destructive suicidal ideation premature death via physician assisted suicide or euthansia In the face of prolonged suffering any imaginable strategy may be used. If suffering is prolonged, and significant the strategies may become particularly destructive.

Place of death Preference: 90% want to die at home Reality: 20% will die at home Majority of institutional deaths could occur at home Societal lack of familiarity with dying process With increased technology, death has moved out of the home. In 1950, 50% of deaths occurred in institutions. In 1992 57% died in hospitals, 17% died in nursing facilities, 20% died at home. Most deaths are expected and with support, could occur at home where individuals want to die. Today only a minority of individuals, nurses, physicians, have actually seen someone die. Television and movies rarely show how death actually occurs.

Role of hospice, palliative care Hospice started in US in 1970s Percentage of total US deaths in hospice 11% in 1983 17% in 1995 Median length of stay 20 days Hospice grew out of a need to help families care for loved ones at home when faced with life threatening illness. Initially they were volunteer organizations. In 1982 Medicare began offering a hospice benefit if the prognosis was felt to be less than 6 months. With the advent of Medicare coverage, there has been a dramatic increase in the number of hospice organizations, but they are caring for a small minority of patients. Of those dying with cancer, only 40% are ever referred to hospice. While referral to hospice has increased, the referral is often late and the patient does not spend enough time to experience the benefits. In 1995 median length of stay was 36 days. 1998 it was 20 days or less. A recent shift in hospice care has been to develop palliative care programs and consult services. Organizations are changing names from hospice to palliative care. The goals are to manage symptoms and provide support early in the illness. It is felt good palliative care may increase life expectancy.

Bridge the Gap: Large gap between reality, desire Fears Die on machine Die in discomfort Be a burden Die in institution Desires Die not on ventilator Die in comfort Die with family and friends Die at home Large gap between reality and desire of most Americans. Treatment has become aggressive with inadequate attention paid to symptom management. Families are ill equipped to cope. American Medical Association has prepared an curriculum [EPEC] to prepare physicians to care for dying patients. The ANA has developed materials for nursing [TNEEL]. What is the role of the APN? Do we assume the nursing role, the medical role, or are we a bridge between the two?

The palliative care approach Adapted from lecture by Maxine de la Cruz, MD

What is Palliative Care? Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. In simple terms, palliative care include a number of interventions that we can do to help our patients and their families cope with the problems caused by cancer or by the cancer treatment. The World Health Organization has recognized that physical problems, emotional problems often start at time of diagnosis, thus their definition is not based on stage of disease, rather the presence of symptoms. Offers hope in getting the best quality of life, and hope about making our life and the life of our family the best during these very difficult times

What is Palliative Care? In patients with serious illnesses, irrespective of prognosis (any age/stage)… Complex Symptom Management Emotional and Spiritual Support for Patients And Families Assistance with Difficult Medical Decision Making Support for Referring Physicians and Plans of Care Assistance with Coordination of Care (i.e. home/outpt Palliative or transitions to Hospice Care)

Medicare Hospice Benefit Not your Momma’s Palliative Care: A Conceptual Shift Medicare Hospice Benefit Life Prolonging Care Dx Death Old Palliative Care Bereavement Hospice Care Life Prolonging Care New 20 20

Palliative care continuum Palliative care can be employed from time of diagnosis until death It has a role in the relief of symptoms and suffering and improving quality of life

What are the goals of Palliative Care Reduce physical and emotional symptoms Improve function and reduce disability Integrating complimentary therapies into patients’ current treatment Coordinate with patient’s primary care specialist in order to achieve the best possible care Assist in making informed decisions throughout their illness Offer assistance in finding end-of-life resources and coordinating care with community services Allow simultaneous palliation of suffering along with continued treatment (no requirement to give up curative care)

Why is Palliative Care Different Patient and family centered approach to care that optimizes quality of life by anticipating, preventing, and treating suffering Interdisciplinary team work closely together A model of shared decision making

The Patient’s Perspective Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2):163-168. The Patient’s Perspective What Do Palliative Care patients want?

Patient- and Family-centered Care Components of Palliative Care Patient- and Family-centered Care Patient Population Comprehensive Care Interdisciplinary Team Attention to relief of suffering Timing Quality Improvement Communication Continuity of care across settings Equitable Access Addressing regulatory barriers

Who Can use palliative care People of all ages with life threatening illness and their families benefit from palliative care at various stages of their disease with congenital injuries or dependent on life-sustaining treatment with acute, serious, life-threatening illness living with progressive Chronic conditions with Chronic and limiting injuries from accidents or other forms of trauma

Members of the Palliative Care Team Clinical Team Physician Nurse Practitioner Nurse Dietician PT/OT Pharmacist Psychosocial Team Social Worker Case Manager Psychologist Chaplain

What are the common symptoms experienced by patients PAIN FATIGUE NAUSEA CACHEXIA ANOREXIA INSOMNIA DEPRESSION ANXIETY DROWSINESS SHORTNESS OF BREATH CONSTIPATION SPIRITUAL DISTRESS CONFUSION/DELIRIUM

Symptoms at the End of Life: Cancer vs. Other Cancer Other Pain 84% 67% Trouble breathing 47% 49% Nausea and vomiting 51% 27% Sleeplessness 51% 36% Confusion 33% 38% Depression 38% 36% Loss of appetite 71% 38% Constipation 47% 32% Bedsores 28% 14% Incontinence 37% 33% Seale and Cartwright, 1994

Patient with Pain Pain is an unpleasant sensation happening in varying degrees of severity. Caused by direct effect of the tumor or from treatment such as radiation therapy or chemotherapy. Untreated pain may interfere with: Daily activities and function Appetite Sleep Joy with family and friends When pain is well controlled you can: Be active Interact with family and friends Sleep better Improved quality of life Opioids such as morphine are needed to control pain in most patients Other non pharmacologic therapies that may be used include: Breathing and relaxation exercises Guided imagery Massage, pressure and vibration Music therapy Distraction Heating pads and cold packs

Patients’ concern with pain medications “I can only take medicine or other treatments when I actually have pain.” “I will become ‘hooked on’ or ‘addicted to’ pain medicine.” “If I take too much medicine now, it will stop working, and I may need it later.” “If I complain too much, I am not being a good patient.”

Approach to a Patient with Multiple Symptoms 55 y/o male with prostate Ca, metastatic to bone complains of fatigue, drowsiness and back pain – x 2 weeks, partial relief with hydrocodone also noted to have swelling of the legs, anxiety, emotional distress Cancer treatment cancer included surgery, androgen blockade with Casodex, and Taxotere Had a very supportive family Wife also recently diagnosed with Liver cancer and receiving therapy

Interdisciplinary approach to treatment Address pain control via opioids and behavioral therapies Physical therapy for mobilization and strengthening Other therapeuitic modalities like art therapy, music therapy Psychosocial team members for emotional and spiritual support Use of psychostimulants for fatigue and drowsiness

Patients with Fatigue Fatigue is excessive feelings of tiredness that may not be relieved by extra amounts of sleep or rest. Fatigue is controllable. Causes • Pain • Emotional stress/ lack of sleep • Infection • Low red blood cell counts • Inactivity/deconditioning • Advanced cancer or cancer treatment • Difficulty breathing

Patients with Fatigue What can we do? Treat possible reversible causes. Phamacologic management Non-pharmacologic therapies What can the family do? Encourage physical activity Continue to engage patients in meaningful interactions Lifestyle and environmental modifications What awaits us in the future? Studies focused on treatment: thalidomide, dexamethasone, donepezil, methylphenidate

Bruera and Hui, 2012, p1261-1269

Bruera and Hui, 2012, p1261-1269

Bruera and Hui, 2012, p1261-1269

Bruera and Hui, 2012, p1261-1269

Bruera and Hui, 2012, p1261-1269

Patient and Hospice Care Even if there are no further plans for treatment of the cancer, patients will continue to need medical care. Hospice care is provided at home by trained health care providers. Hospice Services: • Physician services and home care visits by hospice nurse • Home health aide and homemaker services • Spiritual support and social work • Medical equipment and supplies • Medications • Volunteer support • PT/OT, speech therapy and dietary counseling • Bereavement counseling and support services

What is end of life (EOL) care? Important part of palliative care Refers to the care of a person during the “last part” of their life, from the point at which it has become clear that the person is in a progressive state of decline, may be from hours to months depending on the clinical situation. May be referred to as terminal illness and terminal care.

Dame Cicely Saunders “You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.” Dame Cicely Saunders, founder of the hospice movement

Where is Hospice? “Home”: primary or family residence, nursing home, group home, assisted living facility; mandated to be >80% of delivered care of any hospice’s services Inpatient facility: Short term, 3-5 days Continuous care at home: Highly regulated, typically 24 hours Respite care

Who is eligible for hospice? Advanced disease with life expectancy of “six months or less” given natural course of disease (may be longer if patient meets criteria) Poor functional/nutritional status High morbidity/mortality markers Patient or SDM must give consent Payment sources Looking at the Medicare guidelines- have Medicare part A and have a terminal illness. Eligibility criteria varies by hospice agency- primary caregiver; type of treatments – are they palliative or curative?; location of patient- shelter, group home, mental institution.

Hospice Access Issues Culture Race Religious Diversity Insurance issues Geography Healthcare staff Median survival in Hospice care is 2-3 weeks, primarily due to late physician referrals The Surprise Question Race: Often, non-Caucasians feel that health care has not necessarily been equal or without prejudice. There are feelings of uncertainty as to why treatments are being withdrawn or withheld and feelings of discrimination that the underlying reason may be to save money and technology for others. Culture: Difficulty of some hospices to provide culturally diverse care- staff that speaks the patient’s language. Also, hospice often views the death process from the western European-American perspective, so there may be concern over cultural rituals and healthcare practices. Religion: Historically, hospice has its foundation in the Christian tradition; important to provide for all faiths during patient care and with bereavement follow-up. Insurance or lack of it. Geography- rural, underserved areas.

What is Hospice Care? (2:16) http://www.youtube.com/watch?v=YDTOEvxk_qY

It cannot corrode faith. It cannot destroy peace. DEATH IS SO LIMITED It cannot cripple love. It cannot shatter hope. It cannot corrode faith. It cannot destroy peace. It cannot kill friendship. It cannot suppress memories. It cannot silence courage. It cannot invade the soul. It cannot steal eternal life. It cannot conquer the spirit. Death is so limited! Author unknown

Thank You

Thanks to Dr. Fay, Dr. Maxine de la Cruz, and Michelle Peck. If you would like the slides please email Linh.M.Nguyen@uth.tmc.edu Recommended resources EPERC Fast Facts http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts VITAS hospice app https://itunes.apple.com/us/app/vitas-hospice/id488224057?mt=8

References Bruera, E., & Hui, D. (2012). Conceptual models for integrating palliative care at cancer centers. Journal of Palliative Medicine, 15(11), 1261-1269. doi: 10.1089/jpm.2012.0147; 10.1089/jpm.2012.0147