Brief descriptions of the roles and responsibilities of each core interdisciplinary team (IDT) member are presented below. In practice, each healthcare discipline develops "standards of practice" for which they are held accountable. The roles and responsibilities of adjunct team members are presented in the section on "Patient and Family Services."
As members of the IDT, patients are not passive recipients of healthcare services, but rather active directors of their own care. Who is to say what constitutes high quality end-of-life care? Increasingly, and despite contrary responses among some healthcare providers, experts agree that the most defensible answer to this question is, "The patient, that's who." Not the patient's doctor, nurse, or social worker. Not his or her family members or other caregivers. These individuals may, and in most cases, should provide guidance to help the patient understand his or her illness and prognosis and make informed decisions regarding care. But whenever possible, final decisions regarding care are best made by the patient.
So what does constitute high quality end-of-life care from the patient's perspective? In a 1999 study, researchers asked seriously ill patients what they wanted when it comes to coping with advanced illness and approaching the end of life. The answers they received ring with familiarity because they are what most of us would want:
Abundantly patient-centered, the TCPC Program strives to meet these and other patient preferences for palliative and end-of-life care. A palliative care nurse solicits patient preferences during an initial, comprehensive in-home assessment. Findings from this assessment are used to develop a plan of care that is consistent with the patient's treatment preferences and personal and spiritual values. As part of the plan of care, the patient is encouraged to designate a proxy who is empowered, through an advance directive, to make healthcare decisions in the event the patient is unable to do so. Regular re-assessments ensure that the plan of care continues to reflect the patient's preferences as his or her circumstances change.
The term family members is used loosely here to refer to individuals close to the patient who provide care — emotional, physical, financial, or otherwise — to the patient. It is well documented that family members, primarily spouses and adult children, provide the bulk of care to the frail elderly. A 1999 study reported in the New England Journal of Medicine confirms that they also provide the vast majority of assistance with nonmedical end-of-life care. The study showed that in 96% of cases the primary caregivers for terminally ill patients were family members. Most patients relied completely on family members and friends for assistance with such tasks as transportation, homemaking, nursing care, and personal care. Providing such care can be physically taxing, emotionally draining, and financially burdensome. It can also be unspeakably rewarding, both personally and spiritually. This aspect to care giving accounts for why most caregivers do it and why they wouldn't dream of not doing it. But they need assistance.
All healthcare members of the IDT are responsible for helping family caregivers to help the patient. These informal service providers need training and education so that they can safely and effectively meet the medical and personal care needs of patients at home. They need counseling to help them cope with the demands of caregiving and with their own emotions and grief. They need practical assistance in obtaining and managing all the medical and nonmedical services the patient requires. At times they need an understanding look, a caring smile, and a shoulder to cry on.
The TCPC Program requires each patient to have a primary care person who is available to provide care or, alternatively, if the patient can function independently at the time of admission, to ensure that an appropriate caregiver will be available to provide care should it become necessary. This caregiver, most often a family member, typically serves as the family's liaison to the patient's healthcare providers. A palliative care nurse assesses the caregiver's needs upon admission of the patient and conducts regular reassessments to ensure that the caregiver's changing needs, as well as those of the patient, are being met. While the caregiver is an invaluable resource to the health team and the patient, he or she is not empowered to make decisions for the patient unless the patient is incompetent and the caregiver is the patient's designated healthcare proxy.
In the TCPC Program, a palliative care physician and the patient's primary physician jointly share responsibility for the patient's care. In practice, the palliative physician typically undertakes most ongoing medical services while coordinating care from other providers, including the patient's primary physician and specialists. This approach helps prevent the service fragmentation that otherwise often occurs in healthcare systems.
Palliative care physicians are proficient in treating advanced illness and managing pain and other symptoms. As the physician representative on the IDT (primary physicians rarely attend the team conferences), the palliative care physician ensures that consensus about care is reached between specialists and other physicians involved in the patient's care in consultation with the patient and family. Patient choice and informed decision-making are emphasized in the development of the care plan.
Medicare and most other medical insurance plans pay for "medically necessary" care. The palliative care physician certifies that the patient needs the services provided and signs the plan of care. All changes in the plan of care and the patient's condition are reported to the palliative care physician and documented in the patient's clinical record. In turn, the palliative care physician communicates or collaborates with the patient's primary physician on changes to the plan of care.
Palliative care nursing practice is conducted within an affiliative matrix. The palliative care nurse works with other members of the IDT to develop and implement the patient's plan of care. He or she functions as a care manager coordinating the implementation of the care plan. The nurse also shares an advocacy role for patients and families with other members of the team. In developing and maintaining collaborative relationships with other members of the IDT, the nurse must be flexible in dealing with the inevitable role blending that takes place (Standards of Hospice Nursing Practice and Professional Performance, 1995).
Skilled services are provided by or under the supervision of registered nurses following a medically approved plan of care developed by the IDT. Palliative care nurses are adept in the art and science of pain and symptom management and have well-developed physical assessment and evaluation skills. Other services include administration of medication and treatments, emotional support, and patient and family education and instruction. Each nurse care manager maintains contact with the patient and family and other healthcare providers across the continuum of care should the patient require services outside the home setting.
The palliative care nurse collects patient and family data through assessment of the patient's physical, emotional, spiritual, social, psychological, and cultural status. The nurse assesses the patient's and family's coping strategies, support system, and learning needs in collaboration with other members of the team. The scope and intensity of reassessment is determined by ongoing and systematic evaluation of the patient's needs and family condition. Real or potential problems to be addressed are derived from analysis of the multidimensional assessment data collected by the team and validated by the patient and family (Standards of Hospice Nursing Practice and Performance, 1995).
Palliative care social workers provide counseling and spiritual care to help patients and their families address their economic, psychosocial, and emotional needs. Skilled in active listening, the social workers take their lead from their clients, assessing the patient's and family's needs and preferences for care in an initial consultation and subsequent reassessments. They then develop a social work plan of care based on their assessment findings. Of the five domains that constitute quality end-of-life care according to patients — receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden on family members, and strengthening relationships with loved ones (Singer, et. al, 1999) — palliative care social workers spend much of their time with patients addressing the last three. Their services can take many forms.
Social workers help patients achieve a sense of control by discussing with them and their family members issues that both groups typically want to address but too often avoid — issues such as death and dying, substitute decision making for life-sustaining treatment, and memorial planning. They help alleviate the burden on family members by assessing the patient's and family's economic, psychosocial, and spiritual needs, and then helping to obtain resources to meet those needs. They might, for example, assist patients with applying for In-Home Supportive Services or Meals on Wheels, and help caregivers arrange for respite services. They also help strengthen relationships between patients and their loved ones through such services as individual and family counseling. They help patients and families find closure by discussing the patient's achievements, assisting with life review, and, in some cases, by helping to create a memorial videotape of the patient for the surviving family members. A wide range of other social work services are available depending on the needs of patients and family members.
The social worker works closely with and supports the work of other IDT members. Often, the social worker shares care management duties with the palliative care nurse. Like the other members of the core IDT, the social worker is a constant in the patient's care, from admission on through the dying process.
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For more information about the TriCentral Palliative Care Toolkit visit www.growthhouse.org/palliative/. All content is Copyright © 2002, 2003 by Richard D. Brumley, M.D. All rights reserved. No part of this toolkit may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publishers. This guide to developing home-based outpatient palliative care services was developed through a grant to the Kaiser Permanente TriCentral Service Area from The Project on Death In America. The Kaiser Permanente TriCentral Palliative Care Program is a Sustaining Member of the Inter-Institutional Collaborating Network On End-of-life Care (IICN) which links major organizations internationally.