The Clinical Essentials ofPalliative Care

Diane E. Meier, MD

Center to Advance Palliative Carein Hospitals and Health Systems

a Robert Wood Johnson Foundation - Mount Sinai School of Medicine initiative

www.capc.org 041304

Case: Joan Smith

•87-year-old with advanced dementia, stage IV pressure ulcer, fever, hypotension•Hospitalized•Surgical debridement•Persistent fever•Repeat surgeries•Septic, hypotensive, on pressors in the ICU•Patient constantly moaning, agitated unless sedated

Objectives

• What is palliative care?

• Why do patients need it?

• How do physicians provide it?

• Where can you learn more?

What Is Palliative Care?

Medical treatment that aims to relieve suffering and improve quality of life simultaneously with all other appropriate treatment for patients with advanced illness, and their families.

Specifically:Palliative Care Is

Excellent, evidence-based medical treatment

Vigorous care of pain and symptoms throughout illness

Care that patientswant at the same time as efforts to cure or prolong life

Palliative Care Is NOT

Not “giving up” on a patient

Not in place of curative or life-prolonging care

Not the same as hospice

Palliative Care in Practice

• Expert control of pain and symptoms• Uses the crisis of the hospitalization to

facilitate communication and decisions about goals of care with patient and family

• Coordinates care and transitions across fragmented medical system

• Provides practical support for family and other caregivers

Current system: Cure versus Care Model

Life Prolonging Care

Medicare

Hospice

Benefit

D

E

A

T

HDisease Progression-years

Diagnosis of serious illness

Death

Palliative Care’s Place in the Course of Illness

Life Prolonging TherapyLife Prolonging Therapy

Palliative CarePalliative Care Medicare Hospice Medicare Hospice BenefitBenefit

Why do patients need palliative care?

Palliative care imperatives:

ClinicalEducational

FiscalDemographic

Demand

The Clinical Imperative

• Numerous studies document patient suffering: pain, nausea, breathlessness, anxiety, depression, fatigue

• Poor to non-existent communication in the hospital: physicians typically elicit fewer than half of patients’ concerns and don’t discuss values, goals of care, and treatment decisions

Tulsky, 2003; Maguire 1999; Heaven 1997

Self-Reported Symptom Experience of Critically Ill Cancer Patients Receiving Intensive Care Nelson JE, Meier DE, Oei EI et al. Crit Care Med 2001;29:277-282

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75%75%71%71% 68%68%

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Patients Asking For Physician Assisted Suicide:

By any measure, a sign of serious distress

• National representative survey: One in five U.S. physicians have received at least one request to help a terminally ill patient die.

• One in twenty have honored one or more requests

• Primary predictors of honoring a request: Severe pain OR 2.4

Severe discomfort OR 6.5Meier et al. N Engl J Med 1998;338:1193. Meier et al. Arch Int Med 2003;163: 1537.

The Fiscal Imperative

National Health Expenditure Growth 1970-2003

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HCFA, Office of the Actuary, National Health Statistics Group, 2003

The Fiscal Imperative

• Exponentially rising costs with effective new technologies, aging population-

• $1.4 trillion in 2002• 9.2% growth in Medicare hospital payments in

2001• 76% of 2002 Medicare budget spent on hospital

care ($198 billion)

• Hospital of the future will have to efficiently and effectively treat chronically and seriously ill in order to survive

The Demographic Imperative:

Is this patient ‘terminally ill’?

• 94 y/o with myelodysplastic syndrome, congestive heart failure, a systolic blood pressure of 100, and shortness of breath at rest or with mild exertion. She is treated with monthly transfusions, an ACE inhibitor, a beta blocker, and judicious use of diuretics.

Is this patient terminally ill?(slide courtesy of Joan Teno MD, Brown University)(slide courtesy of Joan Teno MD, Brown University)

The Demographic Imperative

The Reality of the Last Years of Life: Death is not Predictable(slide courtesy of Joanne Lynn, MD Rand Corp.)

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The demographic imperative:

Chronically ill, aging population is growing

• The 63% of Medicare patients with 2 or more chronic conditions account for 95% of Medicare spending (CDC)

• The number of people over age 85 will double to 9 million by the year 2030 (CDC)

Demand for palliative care: What patients and families want from the healthcare system• 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 1999Steinhauser, et al. Ann Intern Med 2000; 132: 825-32

What Do Family Caregivers Want?

Study of 475 family members 1-2 years after bereavement

• Loved one’s wishes honored• Inclusion in decision processes• Support/assistance at home• Practical help (transportation, medicines, equipment)• Personal care needs (bathing, feeding, toileting)• Honest information• 24/7 access• To be listened to• Privacy• To be remembered and contacted after the death

Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics

“Modern Medicine

”

Hospice

Palliative Care

How does PC help patients?

Palliative care effectively responds to these imperatives:

ClinicalEducational

FiscalDemographic

Demand

Palliative Care Improves Quality

Data demonstrate that palliative care:• Relieves pain and distressing symptoms• Supports on-going re-evaluations of goals of care and

difficult decision-making• Improves quality of life, satisfaction for patients and their

families • Eases burden on providers and caregivers• Helps patients complete life prolonging treatments• Improves transition management

Campbell et al, Heart Lung, 1991; Campbell et al, Crit Care Med, 1997; UC Davis Health System News; 2002; Carr et al, Vitas Healthcare, 1995; Franklin Health, 2001; Dartmouth Atlas, 2000; Micklethwaite, 2002; Du Pen et al, J Clin Oncol, 1999; Finn et al, ASCO, 2002; Francke, Pat Educ Couns, 2000; Advisory Board, 2001; Portenoy, Seminars in Oncol, 1995; Ireland Cancer Center, 2002; Von Roenn et al, Ann Intern Med, 1993; Finn J et al ASCO abstract. 2002; Manfredi et al JPSM 2001; Schneiderman et al. JAMA 2003; Higginson et al JPSM 2002 & 2003; Smith et al. JCO 2002, JPM 2003; Coyne et al. JPSM 2002; www.capc.org.

Improvement in Symptoms for 2500 Mount Sinai Hospital Patients followed by the Palliative Care Service (6/97-10/02)

Initial Evaluation Final Evaluation

Moderate

Severe

Mild

None

Pain

Nausea

Dyspnea

Percent of Palliative Care Families Satisfied or Very Satisfied Following Their Loved Ones Death With:

• Control of pain - 95%• Control of non-pain symptoms - 92%• Support of patient’s quality of life - 89%• Support for family stress/anxiety - 84%• Manner in which you were told of patient’s

terminal illness - 88%• Overall care provided by palliative care

program- 95%Source: Post-Discharge/Death Family Satisfaction Interviews, Mount Sinai Hospital, New York City

Palliative Care Is Cost-Saving, supports transitions to more appropriate care settings

• Palliative care lowers costs (for hospitals and payers) by reducing hospital and ICU length of stay, and direct (such as pharmacy) costs.

• Palliative care improves continuity between settings and increases hospice/homecare/nursing home referral by supporting appropriate transition management.

Lilly et al, Am J Med, 2000; Dowdy et al, Crit Care Med, 1998; Carlson et al, JAMA, 1988; Campbell et al, Heart Lung, 1991; Campbell et al, Crit Care Med, 1997; Bruera et al, J Pall Med, 2000; Finn et al, ASCO, 2002; Goldstein et al, Sup Care Cancer, 1996; Advisory Board 2002; Project Safe Conduct 2002, Smeenk et al Pat Educ Couns 2000; Von Gunten JAMA 2002; Schneiderman et al JAMA 2003; Campbell and Guzman, Chest 2003; Smith et al. JPM 2003; Smith, Hillner JCO 2002; www.capc.org.

How do physicians provide

palliative care?

Domains of Palliative Care

• Communication, help with medical decision-making

• Expert symptom assessment and treatment

• Psychosocial and practical support, care coordination, and bereavement services

Communication

• Essential to practice of palliative medicine: decreases anxiety, improves well-being, satisfaction with providers and health care, and outcomes

• Good communication: honesty, willingness to talk about dying, sensitive delivery of bad news, listening, and encouraging questions.

• MD role: Articulating choices, likely benefits and burdens, and helping patient/family to make medically appropriate decisions in keeping with their goals.

How to Communicate• Establish realistic, attainable goals of care

– Help patients and families understand scope of illness and likely progression

– Identify relevant values and goals– Define “acceptable” and “unacceptable”

quality of life– Define choices to be made and their benefits

and burdens– Help with decision-making– Develop care plans that maximize chances

that goals will be achieved

Establishing Goals of Medical Care

Communicating Bad News

Withholding/Withdrawing Treatment

Get started and create the right setting: Plan what to say, create a conducive setting, allow adequate time, and determine who else should be present

Establish what the patient knows: Clarify the situation and context in which the discussion about goals is occurring

Establish what the patient knows: What is known, access ability to comprehend, reschedule if unprepared 

Establish and review the goals of care

Explore both what patients are expecting and hoping to accomplish: Help identify realistic and non realistic goals

Establish how much the patient wants to know? Recognize and support different preferences. People handle information differently

Establish the context of the current discussion: What has changed to precipitate the discussion?

Suggest realistic goals: Explore how goals can be achieved and work through unreasonable/ nonrealistic expectations

Share the Information: Say it then stop (avoid jargon, pause frequently, check for understanding, use silence), don’t minimize the information

Discuss specific treatment(s) in context of goals of care: Will continuation or initiation of the treatment meet the goals of care?

Communication Protocol

 

Discuss alternatives to the proposed treatment and what will happen if the patient decides not to have the treatment

Respond empathetically to feelings: Be prepared for strong emotions and allow time for response, listen, encourage description of feelings. Allow silence

Make a plan and follow through: What treatments will be undertaken to meet goals. What treatments will not be utilized. Establish a concrete plan for follow-upReview and revise periodically as needed

Planning/Follow up: Plan for next steps, discuss potential sources of support, give contact information, assess patient safety and supports, repeat news at future visits

Document, disseminate (i.e., to family, other healthcare team members), and implement plan for withdrawal of treatment

Protocol, continued

Symptom Assessment and Treatment

3 items necessary for good pain and symptom management:

1. Routine and repeated assessment

2. Skill in prescribing

3. Treatment of side effects

Symptom Assessment and Treatment

• Pain management– Pain meds administered on standing or regular

basis– PRN or rescue doses available for breakthrough

pain or pain not controlled by regimen– All patients on opioids should be started on a

bowel regimen– WHO analgesic ladder should be used as a

guide for most pain syndromes

WHO Analgesic Ladder

Mild Pain (1-3/10 on a 10 point scale): Begin acetaminophen or a non-steroidal antiinflammatory agent (consider opioids instead in older adults)

Moderate Pain (4-7/10): Begin an opioid combination product (acetaminophen + codeine, acetaminophen + oxycodone, acetaminophen + hydrocodone) and dose based upon opioid half life (3-4 hours) not acetaminophen half life (6-8 hours).

Severe Pain (8-10/10): Begin a strong standing opioid (hydromorphone, morphine sulfate, oxycodone) and titrate until pain relief is obtained or intolerable side effects develop. Long acting opioids (sustained release morphine/oxycodone, transdermal fentanyl) should be started after pain is well controlled and steady state is achieved.

Symptom Assessment and Treatment: Pain

– Rescue doses employing immediate release opioids, dose should be 10% of the 24 hour total opioid dose and given every hour (oral) and every 15 - 30 minutes (parenteral) as needed. Methadone should only be used by clinicians experienced in its use.

– Adjuvant agents (corticosteroids, anticonvulsants, tricyclic antidepressants, bisphosphonates) should be employed for specific pain syndromes when applicable (e.g., neuropathic pain).

50% of pain management = side effect management

• Constipation

• Nausea

• Confusion, sedation

Constipation

• Does not resolve!• Morbidity: obstruction, nausea, delirium,

perforation, death• Prevention; monitoring; check for and treat

impaction• Rx: softeners, polyethylene glycol powder

Miralax, senna, bisacodyl tabs or suppositories, sorbitol, mg citrate, enemas

Nausea

• CTZ- area postrema of medulla; vestibular; delayed gastric emptying

• Tolerance develops: Usually resolves after 3 – 5 days

• If persistent nausea – evaluate for other causes

• Metoclopramide, haloperidol, diphenhydramine (DA, 5HT, histamine)

Sedation• Side effect versus need to catch up on sleep after pain

resolves• Tolerance develops rapidly (hours)• Sedation always predates respiratory depression• If RR < 8 and patient unarousable, use 10:1 dilution of

naloxone, tirate to arousal, and monitor closely• Naloxone half life = minutes• Persistent sedation usually multifactorial• Rx- identify and treat underlying contributors, opiate

dose adjustment, opiate rotation, antipsychotics, psychostimulants,

If you don’t ask you won’t know. Routine assessment is prerequisite to good

symptom management.

– Pain– Weakness– Fatigue– Anorexia/cachexia– Constipation– Dyspnea– Nausea– Constipation

– Anxiety– Depression– Delirium– Sleep– Energy– Hopes and fears– Biggest concern– Tools at

www.promotingexcellence.org

Practical Support and Care Coordination:Mobilizing Community Resources

• 95% of the illness and the care occurs at home• Families provide >70% of long term care• Most patient/family needs cannot be met in

physician offices and hospitals• Physicians can help by coordinating array of

community services for patients and families – Home safety and needs evaluation, PACE, visiting RN/home care services, case management, hospice, financial planning resources, Medicaid eligibility, family support groups.

Case Study: What Actually Happened

82-year-old woman with hypertension, diabetes, renal failure osteoporosis, vision loss. Cycle of health crises- falls, fractures, pneumonia •Hospitalized three times in 9 months•Home with Medicare-Certified Home Health Agency, discharged from homecare after 4 weeks- new crisis = hip fracture and repeat hospitalization •In pain, symptoms not managed- long hospital stay, resulting in progressive deconditioning, weakness, functional decline•Not ready for hospice but in need of more support in hospital and ongoing transition management and care coordination at home

Palliative care for:–Pain and symptom relief - facilitates success of rehabilitation, reduces hospital length of stay–Patient/family discussions re: needs/goals, advance care planning–Mobilizing home needs assessment–Identification of ongoing support services at home–Plan for coordination and monitoring after home care ‘skilled need’ terminates–Support for gradual transition to hospice if and when illnesses progress to terminal stage

Case Study: What Should Have Happened

Summary:Domains of Palliative Care

• Communication and decision support

• Symptom assessment and treatment• Psychosocial and practical support,

community care coordination, and bereavement services.

More and more physicians are providing palliative care

• Number of hospital-based palliative care programs has doubled in recent years to more than 800

• One in five hospitals now offers palliative care• US News & World Report includes palliative care in

its criteria for “America’s Best Hospitals”• ABHPM certifying more and more physicians• Referral rates at established programs are growing

each year

Billings JA et al J Pall Med. 2001, AHA Survey 2002, Pan CX et al J Pall Med. 2001

But…

• Number of palliative care programs, specialists not sufficient to meet patient need

• In absence of comprehensive palliative care programs and PC specialists, physicians need basic PC clinical skills

Where can you learn more?

Education is Not OptionalTraining opportunities• ELNEC www.aacn.nche.edu/elnec• EPEC www.epec.net• DELeTCC www.deletcc.coh.org• EPERC www.eperc.mcw.edu• AAHPM www.aahpm.org• Harvard www.hms.harvard.edu/cdi/pallcare/• Fellowship training

www.aahpm.org• ANP palliative care training programs,

ANCC certificationwww.hpna.org

www.nursingworld.org• MD Certification: ABHPM

www.abhpm.org

Tools and Training

Go to www.capc.org 1. Palliative Care Leadership Centers: six premier

palliative care programs hosting site visits and providing ongoing mentoring

2. Web site: Comprehensive tools for starting and sustaining palliative care services: billing for palliative care services, clinical models, criteria for referral, clinical forms and procedures, technical assistance publications and presentations

3. CAPC seminars on building palliative care programs4. EPEC: Education for physicians on palliative care5. stoppain.org; palliativedrugs.com; growthhouse.org

“I don’t know enough about palliative care.”

• Get training (EPEC, ELNEC, DELeTCC, AAHPM-HPNA, Harvard advanced courses)

• Subscribe to the J of Palliative Medicine. Get the Oxford Textbook of Palliative Medicine

• Do a site visiting program (Palliative Care Leadership Centers, Cleveland Clinic, Beth Israel Med Ctr in NYC, San Diego Hospice, others)

• Take a year off and do a fellowship or an APN degree program

“Our hospital doesn’t have expertise in palliative care.”

• www.epec.net -MD• www.aacn.nche.edu/

elnec -RN

• www.deletcc.coh.org• www.EPERC.mcw.edu• APN www.hpna.org• Fellowships

www.aahpm.org• Site visiting programs

• Read• Harvard course• Go to the AAHPM

annual meeting• Use the web

– www.palliativedrugs.com– www.growthhouse.org– www.stoppain.org

• Learn by doing!

Other Resources

1. Communication and decision-making

2. Pain and symptom management

3. Care coordination, commmunity resources for patients and families

Communication

1. Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore: Johns Hopkins University Press, 1992 - The definitive guide for communicating bad news.

2. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. JAMA 2001; 286:3007-14. - Practical approaches to self care for physicians caring for seriously ill patients

3. EPEC - A continuing medical education program providing detailed protocols for major communication topics (www.epec.net)

4. The Center for Palliative Care of Harvard University Medical School - Continuing medical education programs in communication skills for practicing clinicians (http://www.hms.harvard.edu/cdi/pallcare/)

Symptom Assessment and Treatment

1. Doyle D, Hanks G, MacDonald N. Oxford Textbook of Palliative Medicine: Second Edition. Oxford: Oxford University Press, 1998. Comprehensive textbook of palliative care.

2. Morrison RS, Meier DE. Geriatric Palliative Care. New York: Oxford University Press, 2003. Comprehensive textbook of palliative care focused specifically on older adults.

3. Education for Physicians in End of Life Care www.epec.net - A continuing medical education program providing practical advice for managing pain and other symptoms

4. Fast Facts and Concepts on End of Life Care- Concise evidence based summaries on treatment of common symptoms www.mcw.edu/pallmed/html/about1.html

Psycho‑Social Support and Care Coordination

1. Elderweb- A comprehensive listing of services for older adults including resources for personal care needs, care coordination, and home care www.elderweb.com

2. EPEC - Contains modules on psycho-social support and grief and bereavement www.epec.net

3. National Agency for Home Care and Hospice www.nahch.org and National Hospice and Palliative Care Organization www.nhpco.org - Trade organizations whose web sites provide comprehensive lists of member home care agencies and hospices searchable by city and zip code.

4. Growthhouse - Grief and Bereavement Resources www.growthhouse.org5. Bereavement and Hospice Support Netline –An online directory of

bereavement and hospice bereavement programs in the U.S www.ubalt.edu/www/bereavement

6. Centers for Medicare and Medicaid Services (CMS) - Information about Medicare coverage and Medicaid eligibility. Information about PACE programs (including their location) and Medicare Choice Programs (which may include case management) can also be obtained at www.cms.gov.

Objectives

• What is palliative care?

• Why do patients need it?

• How do physicians provide it?

• Where can you learn more?

Palliative Care: A Case Example

MJ was an 85 year old women with multiple medical problems including moderate dementia, coronary artery disease, renal insufficiency, and peripheral vascular disease who was admitted to Mount Sinai with urosepsis. Her hospital course was complicated by the development of gangrene of her left foot resulting from her vascular disease, candidal sepsis, multiple pressure ulcers, and recurrent infections. She underwent 5 debridements under general anesthesia. When asked by the primary doctor, her family consistently said that they wanted “everything done”.

On day 63 of her hospitalization, a palliative care consult was initiated to help clarify the goals of care and to treat the patients’ evident pain and discomfort. She was persistently moaning in pain and resisting all efforts to reposition or transfer her or to change her dressings. The palliative care team met with her son (her health care proxy) and her two grandchildren. During a 90 minute discussion, the team explored with the family what they hoped to accomplish for the patient. The team reviewed the hospital course and clarified any confusion about her diagnosis and prognosis. Possible sources of discomfort and pain were identified. A treatment plan was initiated which included morphine sulfate to treat the pain associated with her necrotic foot, discontinuing her antibiotics, withholding hemodialysis for her acute renal failure, treating her fevers with acetaminophen, and transferring her to the palliative care unit. The patient was subsequently discharged 2 days later when a bed at a nursing home that had a hospice contract became available. The family expressed tremendous satisfaction with the resolution of her hospitalization and continue to visit her daily in the nursing home where she is reported to be interactive and comfortable.

Although the world is full of suffering, it is also full of the overcoming of it.

Helen Keller

Optimism, 1903