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HOSPICE: OPTIMIZING PALLIATIVE CARE FOR PATIENTS WITH ESRD Judith A. Skretny, M.A. The Center for Hospice & Palliative Care Buffalo, New York

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Page 1: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

HOSPICE: OPTIMIZING PALLIATIVE CARE

FOR PATIENTS WITH ESRD

Judith A. Skretny, M.A.The Center for Hospice & Palliative Care

Buffalo, New York

Page 2: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

We have been challenged by the RWJF ESRD Workgroup

Page 3: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

The Challenge

•Collaboration

•Education

•New and Innovative Models of Care

Page 4: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

What is Hospice?

Is it similar to or different from Palliative Care?

Page 5: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Hospice

• A Philosophy • A Program• A Facility• A Benefit

Page 6: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Hospice Philosophy

• Palliative care for terminally ill patients and their families

• Control of distressing physical symptoms, psychological and spiritual support, and bereavement care

• Interdisciplinary team of professionals and volunteers

Page 7: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Primary Hospice Services

• Physical symptom control-pain, nausea, dyspnea, etc.

• HHA services-bathing, dressing, feeding• Psychosocial counseling-patient and family• Spiritual support-patient and family• Completion of advance directives, wills,

funeral planning• Volunteers• Bereavement services

Page 8: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

The Interdisciplinary Team

• Hospice medical director• Skilled nursing• Social work• Pastoral care• Home health aides• Volunteers• Bereavement programs

Page 9: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Where Can Hospice Services Where Can Hospice Services Can Be Received?Can Be Received?

• Home• Hospital• Nursing Home• In-Patient Units

Page 10: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

The Hospice Benefit Includes:

• All drugs related to terminal illness• All durable medical equipment• Therapies: OT, PT, music, massage, dietary• Other services as approved in plan of care:

radiation, chemoRx, TPN, Tx, hydration, surgery

• Hospice receives approx. $106/day to provide these services

Page 11: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Eligibility for Hospice Care

• MD certified prognosis <6 mos. If disease pursues its usual course

• Any terminal diagnosis is appropriate• Treatment goals are palliative rather

than “curative”• No therapy excluded pro forma• No DNR required

Page 12: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Medicare Hospice Benefit

• Elect Hospice benefit for terminal illness, sign off Medicare A (hospital)

• PMD may remain primary, bills Part B• Benefit periods/90/90/60….days• Patient recertified as hospice eligible at

beginning of each benefit period … unlimited recertifications

• Patient may revoke at any time

Page 13: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Myths: Hospice doesn’t “admit” patients who

• Don’t have cancer• Don’t have a DNR• Are receiving tube feedings or TPN or

IVs• Are receiving chemotherapy or radiation

therapy• Need palliative surgery• Don’t have a primary caregiver

Page 14: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Unfortunate Reality:

Patients with ESRD who continue to receive dialysis cannot

access their hospice benefit.

Page 15: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Hospice

Interdisiciplinary, compassionate, competent end-of-life care that aims to relieve suffering and promote QOL for

patients and their families

Page 16: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Palliative Care and Hospice

A hospice program provides palliative care and supportive services to terminally ill patients, their families and significant others throughout the course of the illness and into bereavement.

Page 17: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Hospice is the pre-eminent

practitioner of palliative care

Page 18: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

HOSPICE = PALLIATIVE CARE

PALLIATIVE CARE > HOSPICE

Page 19: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Palliative Care

No specific therapy is excluded from consideration. The test of palliative treatment lies in the agreement…that the expected outcome is relief from distressing symptoms, easing of pain, and improvement in quality of life.

The decision to intervene is based on the treatment’s ability to meet the stated goals, rather than its effect on the underlying disease.

Page 20: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Barriers to Hospice Referrals:

• Death Denying Society – “giving up”, “hope”

• Medicine is a death defying profession• Lack of training/information• Difficulty re: prognostication• Belief that Hospice is for the last days of

life

Page 21: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Opportunities for Collaboration

Hospices and Dialysis Units are Natural Partners in Providing:

• End-of-life education for staff, patients, families

• Advance care planning seminars for patients and families

• Seminars for staff, patients and families on anticipatory grief, spirituality

Page 22: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Hospices can assist dialysis units by providing:

• Training in having “difficult” conversations

• Support groups for staff of dialysis units• Information on how to discuss Hospice

as part of care planning• Direction on developing bereavement

services

Page 23: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Hospices can assist the medical community by providing:

• Rotation opportunities for nephrologists• Medical student education• University affiliated training for social

workers, PT, OT, nurses, potential nephrology specialists

Page 24: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

When the decision has been made to stop dialysis:

Hospices and Dialysis Units can create a seamless referral process into Hospice that ensures the:

• Same physician will follow the patient• The process of admission is simple• Possible scenarios are anticipated and discussed

i.e. dyspnea, seizures• The patient and family are supported

psychologically and spiritually• Children in the family will receive support from child

life specialists

Page 25: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Innovative Programs

VNA & Hospice of Cooley-Dickinson

Northampton, MA

Page 26: THE CENTER FOR EXCELLENCE IN END-OF-LIFE EDUCATION, RESEARCH AND

Self-Determined Life Closure

The Death of Ivan Ilyich – Tolstoy “What tormented Ivan Ilyich most was

the deception, the lie…that he was not dying but was simply ill, and that he only need keep quiet and undergo treatment and then something very good would result.”