 Early 1900s  Average life expectancy 50 years  Childhood mortality high  Adults lived into 60s

 Prior to antibiotics people died quickly  Infectious disease  Accidents  Medicine focused on caring, comfort  Nursing care in the home  Sick cared for at home

 Science, technology, communication  Marked shift in values, focus of North American society  Death denying  Value productivity, youth, independence  Devalue age, family, interdependent caring

 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

 Modern health care  few cures  longer life with chronic illness  dying process prolonged

 More than 90% will experience:  predictable steady decline with relatively short terminal phase  slow decline punctuated by periods of crisis

Sudden death from an unexpected cause Time Death Health Status

Steady decline, short terminal phase Time Decline Death Health Status

Slow decline, periodic crisis, sudden death Time Crises Decline Death Health Status

 rn0g rn0g

 Fears, fantasy, worry  Multiple physical symptoms  average  Psychological distress  Social isolation  Caregiving  Financial pressures

 Vary among individuals  May become destructive  suicidal ideation  premature death via physician assisted suicide or euthansia

 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

 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

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

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 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)

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

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

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) What are the goals of Palliative Care

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 Why is Palliative Care Different

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): The Patient’s Perspective What Do Palliative Care patients want?

Components of 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

Clinical Team Physician Nurse Practitioner Nurse Dietician PT/OT Pharmacist Psychosocial Team  Social Worker  Case Manager  Psychologist  Chaplain

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

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

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 functionAppetite SleepJoy with family and friends When pain is well controlled you can: Be activeInteract with family and friends Sleep betterImproved 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 vibrationMusic therapy DistractionHeating pads and cold packs Patient with Pain

“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.” Patients’ concern with pain medications

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

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 Patients with Fatigue

Bruera and Hui, 2012, p

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

 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.

to live until you die  “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

 “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

 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

 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

 xk_qY xk_qY

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  Recommended resources  EPERC Fast Facts  ncepts ncepts  VITAS hospice app  hospice/id ?mt=8 hospice/id ?mt=8

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