It has been twenty-nine years since congress passed the Medicare Hospice Benefit, and despite the increase in hospice utilization over those years, still only four of every ten persons dying in the United States is benefiting from hospice.

This is understandable, for it is very different for patients facing death, for those families, and for their physicians to give up trying for a cure. Having to choose between hopsice and continued aggessive care can be hard.

Often this disproportionate focus on continued treatment and test results in little effort to reduce symptoms affecting the patient and the family, whether those symptoms are physical, emotional, socio-economic, or spiritual.

this dissatisfaction with care at the end-of-life resulted in a broad consensus in the 1990s that change was necessary, and would require the support of the community, philanthropic organizations, the entire heathcare team, and eventually, the federal government.

Since doctors control how medicine is practiced to a large degree, it soon became apparent that no meaningful improvement in palliative, end-of-life care would hapen without their active participation. the multicenter SUPPORT study in the mid-90s, designed to use trained social workers and nurses to change outcomes in hospitaliszed dying patients, demonstrated no improvement in outcomes without a change in doctor's attitudes and practices.

Palliative Care, as originally defined by the World Health Organization and the Institute of Medicine, seeks to provide the total active care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. the goal of palliative care is achievement of the best quality of life for patients and their families. It affirms life, and regards dying as a normal process. It neither hastens nor prolongs death. Using an interdisciplinary approach, palliative care can be applied not only to those dying or in a hospice program, but can also serve those patients undergoing active and aggressive treatment for cancer or other life-threatening conditions.

CMS has Redefined Palliative Care:
Palliative Care improves Quality and Helps Relieve Suffering

Palliative care means patient and family-centered care that optimizes qualtiy of life by anticipating, preventing, and treating suffering.

Palliative care throughout the continuum of illness involves addressing physical, intelectual, emotional, social, and spiritual needs and to facilitate patient automony, access to information, and choice.

73 FR 32204, June 5, 2008
Medicare Hospice Conditions of Participation - Final Rule

Palliative Care is NOT only End-of-Life Care and is not dependent on prognosis. Physicians are encouraged to think about palliative care earlier to relieve suffering and improve quality of life rather than wait until death appears near and inevitable. Why is it important to differentiate end-of-life and hospice from palliative care?

1) We really don't know who is dying until the last few days of life, hence very late referral to hospice in the U.S.

2) Most people with palliative care needs are chromically ill and not dying anytime soon, and people have an abiding desire not to be dear!

Palliative Medicine, a new subspecialty of medical practice, was begun in the mid-90s when academic and hospice physicians expanded the nationsl hospice organization to embrace palliative care. This became the American Academy of Hospice & Palliative Medicine, which now has over 4000 membrs. Board certification by AAHPM in this specialty began in 1995. In 2008 with the sponsorship of ten medical specialties, the sub specialty of Palliative Medicine and Hospice received accreditation by the American Board of Medical Specialties. There were over 1200 physicians certied by ABMS in 2008. The majority of these physicians are internists, family practictioners, and oncologists, many of whom are in academic and tertiary-care centers. Fellowship training programs, one or two year, have been established in many of the large treatments centers and medical schools. After 2012 a one-year fellowship will be required for candidates to be eligible for certification. There are approximately 4,000 palliative care physicians, many of whom work part-time. There is a shortage of palliative care physicians, estimated at between 6,000 and 18,000. Advanced practive nurses, also in short supply, will play a large role in the delivery of services in both hospital-based and outpatient palliative care and in hospice care.

End-of-life education was not part of the medical school curriculum in the past, and little emplhais has been given to this subjuect during a doctor's graduate education. This large gap in education was finally addressed in 1997 by Dr. Linda emanuel, who developed the EPEC Project with the support of the AMA and Northwestern Medical School. By the next year she and her co-principals, Drs. Charles vonGunten and Frank Ferris had producted the 12 modules which comprise the series, Education of Physicians on End-of-Life Care. The three day training course is presented at least twice annually, with special courses targeted to oncologists and to neurologist. There are over 1500 doctors who are certified EPEC trainers now teaching end-of-life care in their communities. A similar program, ELNEC, is training nurses in the same educational material. In 2008, 41% of medical schools had palliative care teaching programs, and there wee palliative care services in 1027 of 4000 hospitals in this country.

Quality gaps and challenges in End-of-Life Care:

WHAT PATIENTS WANT:

1-Pain and symptom control
2-Avoidance of inappropriate prolongation of the dying process
3-A sense of control
4-To relieve burdens on family
5-Strengthening relationships with loved ones

Singer et al, JAMA 1999 281(2): 163-168

WHAT PATIENTS GET

1-Family Satisfaction with Hopsitals as the Last Place of Care
2-2000 Mortality Followback Survey: n= 1578 decedents
3-Not enough emotional support of patient: 51%
4-Not enough explanation what to expect during the dying process: 50%
5-Not enough emotional support of family: 38%
6-Not enough help with pain/ shortness of breath: 19%

Teno et al.jama 2004 291:88-93

PALLIATIVE CARE ROLES

1. Expert symptoms management - pain, dyspnea, constipation, nausea
2. Address issues of emotional distress and existential and spiritual suffering
3. Expert at family meetings and establishing consensus re: goals of care and a treatment plan matched to those goals.
4. Improve patient-family professional communication and decision-making
5. Assure safe sustainable discharge plans with services matched to meet needs of complex patients and their family caregivers.

USEFUL WEBSITES

1. www.cape.org (CAPC)
1. www.hpna.org (Hospice & Palliative Nurse Association)
3. www.aahpm.org (American Academy of Hospice and Palliative Medicine)
4. www.swhpn.org (Social Work Hopsice & Palliative Care Network)
5. www.aacn.nche.edu/ELNEC/ (ELNEC Nursing curriculum)

 

Jack Mc Nulty, M.D., F.A.C.P., F.A.A.H.M.
President, Palliative Care Institute of Southeast Louisiana
Medical Director, Hospice of St. Tammany
Assoc. Prof. Clinical Medicine, LSUHSC