HOSPICE AND PALLIATIVE CARE What, Why, When, and How Debra Luczkiewicz MD Attending Physician Hospice Inpatient Unit Center for Hospice and Palliative Care, Buffalo, NY
OBJECTIVES Define hospice and palliative care. Look at hospice and palliative care services provided by Hospice Buffalo. Consider Hospice eligibility criteria for different diagnoses. Understand goals of care and how they interrelate and change.
OBJECTIVES Look at the 7-step protocol to negotiate goals of care. Be able to communicate prognosis and its uncertainty. Learn how to make referrals to Hospice and Palliative Care.
GUIDING PRINCIPLES Death is an inevitable consequence of having life. No amount of medical progress can change this fact. A person s dying days are of just as much value as their non-dying ones. Care is always focused on the needs and wishes of individual patients. Royal Hobart Hospital Goals of Care, Limitation of Treatment, and Resuscitation Policy
TRADITIONALLY Physicians focused on curing illness. Little attention paid to relief of suffering, care of dying. Hospice and palliative care arose in response to a need for specialized care of seriously ill and dying patients.
PALLIATIVE CARE Care for patients of any age, at any stage of advanced and life-threatening illness, throughout illness, and simultaneous with other treatment.
PALLIATIVE CARE Comprehensive, coordinated pain and symptom control. Care of psychological and spiritual needs. Family support. Assistance in making transitions between care settings.
DOMAINS OF PALLIATIVE CARE Pain management. Symptom management. Communication skills Goals of care. Advance directives/dnr. Bad news. Ethics & conflict resolution. Self awareness.
HOSPICE PROGRAMS A Hospice program provides palliative care and supportive services to terminally ill patients, their families and significant others throughout the course of illness and into bereavement.
PALLIATIVE CARE: ORIGINAL MODEL CURATIVE / LIFE PROLONGING CARE PALLIATIVE CARE ILLNESS DEATH
PALLIATIVE CARE: IMPROVED MODEL ILLNESS ONSET DEATH RISK REDUCING CARE CURATIVE/LIFE PROLONGING CARE PALLIATIVE CARE BEREAVEMENT SYMPTOM TREATMENT AND SUPPORTIVE CARE LIFE CLOSURE CARE IN LAST DAYS
SUPPORTIVE MEDICAL PARTNERS Palliative care services throughout Western New York. Serves patients of all ages with serious illness as well as frail elderly with advanced progressive illness. Consultations and coordination of care. Patient s homes, hospitals, long-term care settings or SMP office in Cheektowaga. Home Connections Program.
SUPPORTIVE MEDICAL PARTNERS, cont Patient-centric model of care with comprehensive collaboration. Pain and symptom management. Communication to help understand prognosis and care options, define goals of care, and facilitate acceptance of disease progression. Practical and emotional support for patients and families. Assistance with advanced directives.
HOME CONNECTIONS Interdisciplinary palliative case management model. Works in partnership with patient s medical team. For eligible patients with serious progressive illness: advanced heart or lung disease, cancer, progressive neurological disease, dementia, frequent hospital/er visits. Provides case management, 24 hour phone support, social work services, trained volunteers, with palliative physician oversight. Medicare patients enrolled in Blue Cross and Blue Shield or Independent Health eligible.
REFERRALS TO PALLIATIVE CARE Home Connections Program (716) - 989-2475 Supportive Medical Partners (716) - 686-8460
HOSPICE Hospice is a concept of care, not a place. Emphasis on symptom management & quality of life, not cure. Focus is on the physical, emotional and spiritual needs of the patient and family. Care provided by an interdisciplinary team. Patients choose palliative approach over curative or aggressive treatment. For patients with prognosis of six months or less, if illness follows its usual course.
LOCATIONS OF CARE About 85% of patients are cared for in home settings: Patient or family member s home. Nursing Home/Assisted Living. Group Homes. Hospice Inpatient Units. Hospice (swing) beds in hospitals.
HOME HOSPICE SERVICES Nurse case manager: visits at least once a week, more if needed. Home health aide: 1-4 hrs/day for personal care. Chaplain, Social worker: about every other week and as needed. Physician: Patient s own primary or Hospice physician oversees medical care. On-call: 24 hour support.
HOME HOSPICE SERVICES, cont Extended services: PT, OT, speech, massage music therapy, nutrition counseling, etc. Medical equipment: oxygen, wheelchairs, hospital beds, etc. Medical supplies: bandages, ostomy or incontinence supplies, etc. Prescription drugs: related to terminal illness.
HOME HOSPICE SERVICES, cont Acute symptom management: in Hospice Inpatient Units and hospital swing beds. Respite care: periodically for up to 5 days at a time to provide caregiver break. Volunteer support: for patients and caregivers. Bereavement/grief counseling: 13 months for family/caregivers. Special programs for children.
ELIGIBILITY FOR HOSPICE MD certified prognosis < 6 months if disease pursues its usual course. Any terminal diagnosis is appropriate, as is a combination of conditions in the face of ongoing functional and physical decline. Treatment goals are palliative rather than curative.
THE SURPRISE QUESTION Would I be surprised if this patient died in the next six months?
THE SURPRISE QUESTION Would I be surprised if this patient died in the next six months? If your answer is no, a Hospice referral may be appropriate.
HOSPICE DIAGNOSES, 2005 http://www.longtermcarelink.net/eldercare/hospice.htm
HOSPICE ELIGIBILITY CRITERIA Cancer Cardiac Disease Pulmonary Disease Dementia Adult Failure To Thrive Stroke or Coma
CANCER Tissue diagnosis or diagnostic work-up revealing a mass or multiple lesions consistent with metastatic disease, or Progression from earlier stage to metastatic disease with decline in spite of therapy or desire for no further treatment of cancer, or Earlier stage of known aggressive cancer.
CARDIAC DISEASE Optimally treated with diuretics & vasodilators. NYHA Class IV, or Class III with comorbidities. Class III: Marked limitations of physical activity. Comfortable at rest. Less than ordinary activity causes symptoms. Class IV: Inability to carry out any physical activity without discomfort; symptoms present at rest. EF < 20% helpful (but not required).
CARDIAC DISEASE, cont Other helpful documentation: Symptoms of heart failure at rest. H/O supraventricular or ventricular arrhythmias resistant to therapy. H/O cardiac arrest and resuscitation. Persistent elevation BNP. Multiple hospitalizations. Critical aortic stenosis, not a surgical candidate.
PULMONARY DISEASE Disabling dyspnea at rest, poorly or unresponsive to bronchodilators FEV1 <30% predicted helpful. and documented disease progression Increasing ER visits or hospitalizations. Recurrent pulmonary infections. and hypoxemia at rest on supplemental O2, or hypercapnia po2 < 55 mmhg or SaO2 <= 88% or pco2 >= 50 mmhg.
PULMONARY DISEASE, cont Other helpful indicators: Right heart failure/cor pulmonale. Unintentional weight loss. Resting tachycardia >= 100.
DEMENTIA Beyond stage 7 FAST score. Presence of medical complications within past year: Aspiration pneumonia. Upper urinary tract infection. Decubitus ulcers. Sepsis. Fevers recurrent after antibiotics. Inability to maintain sufficient PO intake with 10% weight loss past 6 months or albumin < 2.5.
FUNCTIONAL ASSESSMENT STAGING (FAST) 6a Unable to dress without assistance. 6b Unable to bathe properly. 6c Unable to manage mechanics of toileting. 6d/6e Urinary/fecal incontinence. 7a Fewer than 6 intelligible words in a day. 7b Single intelligible word in a day. 7c Unable to ambulate without assistance. 7d Cannot sit up without assistance. 7e Loss of ability to smile. 7f Loss of ability to hold head up.
ADULT FAILURE TO THRIVE Decline in functional status Assistance with at least 2 ADLs. Decline in PPS score <70 (decreased ambulation, unable to do work, significant disease). Decline in nutritional status Weight loss >= 10% over 6 months or albumin < 2.5. Dysphagia causing aspiration or decreased PO intake. Increasing ER visits, hospitalizations. Multiple co-morbidities.
STROKE OR COMA PPS < 40% (mainly in bed, extensive disease, inability to work, needing assistance with selfcare). Inability to maintain hydration and caloric intake with one or more of: Weight loss >10% past 6 months or >7.5% past 3 months. Albumin < 2.5. H/O aspiration not responsive to speech therapy. Sequential calorie counts showing inadequate intake. Dysphagia preventing intake sufficient to sustain life.
REFERRALS TO HOSPICE Chart order in any hospital. Call to main number: 686-8000. Anyone can make a referral: Physician Other medical staff Patient Family members
TALKING TO PATIENTS As a close friend of mine once said, One of the scariest things in the world is to look someone in the eye and tell them they are dying. But in my practice I do try to tell patients they are dying because I believe in my heart that it is worse when clinicians don t. Pauline Chen MD, Talking Frankly at the End of Life. NY Times, May 28, 2009.
END-OF-LIFE WISHES 2011 California HealthCare Foundation Survey
WHAT PATIENTS WANT Control of pain and symptoms. To avoid inappropriate prolongation of the dying process. A sense of control. To relieve burdens on family. Strengthened relationships with loved ones. Accurate and sensitive prognostication. Non-abandonment. Tulsky, 2003; Maguire 1999; Heaven 1997
WHAT CAREGIVERS WANT Loved one s wishes honored. Inclusion in decision processes. Support/assistance at home. Practical help (transportation, meds, equipment). Help with personal care needs (bathing, feeding, toileting). Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics
WHAT CAREGIVERS WANT Honest information. 24/7 access. To be listened to. To be remembered and contacted after the death. Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics
FAMILY (DIS)SATISFACTION WITH HOSPITALS 82% Uncertain which MD is in charge. 72% Not enough contact with MD. 51% Not enough emotional support for the patient. 50% Not enough information about what to expect with the dying process. 38% Not enough emotional support for the family. 19% Not enough help with pain/sob. Family perspectives on end-of-life care at the last place of care.; Teno et al. JAMA 2004;291:88-93.
QUESTIONS TO HELP DEFINE GOALS OF CARE What are you expecting? What do you most want to accomplish? What are you hoping for? What do you think will happen? What are you afraid will happen? What do you expect the end of your life to be like?
POTENTIAL GOALS OF CARE Cure of disease. Avoidance of premature death. Maintenance or improvement in function. Prolongation of life. Relief of suffering. Quality of life. Staying in control. A good death. Support for families and loved ones.
MULTIPLE GOALS OF CARE Multiple goals often apply simultaneously. Goals are often contradictory. Certain goals may take priority over others. Goals may change over course of illness Change is gradual. Change is an expected part of the continuum of medical care.
SEVEN STEP PROTOCOL FOR GOAL SETTING 1. Create the right setting. 2. Determine what the patient and family know. 3. Explore expectations and hopes. 4. Suggest realistic goals. 5. Respond empathically. 6. Make a plan and follow through. 7. Review and revise periodically, as appropriate.
STEVE JOBS Almost everything--all external expectations, all pride, all fear of embarrassment or failure--these things just fall away in the face of death, leaving only what is truly important.
COMMUNICATING PROGNOSIS Helps patient / family cope, plan. Increases access to Hospice, other services. Helps patients achieve closure, accomplish goals. Many physicians are uncomfortable discussing prognosis and assume someone else has done so.
THE DIFFICULTY WITH PROGNOSIS Doctors are lousy prognosticators. Physicians overestimate survival in malignant disease by a factor of 5 Christakis, 2003 The standard deviation for estimating survival in chronic non-malignant disease exceeds 2 months NHPCO, 2009
DISEASE TRAJECTORIES
PROGNOSIS Talk in terms of averages "People with your illness can live for a long or a short time. About half live for about 3 months. There is a lot variation for the other half. Some find it is best to plan for little time, and hope for more time. Acknowledge uncertainty and surprises.
PROGNOSIS Consider offering a range that encompasses average life expectancy hours to days days to weeks weeks to months months to years
NEW YORK PALLIATIVE CARE INFORMATION ACT 2/2011 Requires attending health care practitioner to offer to provide patients with a terminal illness with information and counseling regarding palliative care and end-of-life options.
NEW YORK PALLIATIVE CARE INFORMATION ACT 2/2011, cont Information includes: Prognosis. Range of options appropriate to the patient. Risks and benefits of various options. Patient's "legal rights to comprehensive pain and symptom management at the end of life. Information and counseling provided orally or in writing.
HOPE Definition: the feeling that what is wanted will happen. False sense of hope may deflect the patient and family from finding final meaning and value, and closing their lives together. The true skill is to help patients and families find hope for realistic goals, which may change with time.
HOPE, cont Some physicians find it useful to frame discussions using words like: Everyone hopes to win the lottery, but you shouldn t plan your life assuming you are going to win. We need a backup plan. We can hope for the best, but we also need to plan for the worst.
OUR ROLES AS PHYSICIANS Initiate discussions about prognosis, goals, end-of lifecare. Encourage patients to complete advanced directives. Consider palliative care consults for patients with serious illness. Refer to Hospice when appropriate. Continue as patients primary physician.
RANDY PAUSCH To be cliché, death is a part of life and it s going to happen to all of us. I have the blessing of getting a little bit of advance notice and I am able to optimize my use of time down the home stretch.