"I have very definite ideas of what I would want done and what I wouldn't want done..."
"It's very, very important to me now that I can make choices for myself."
"I want control, but it shouldn't be disruptive. It can be productive if it's thoughtful and others are consulted."
These statements are among the responses received by researchers Singer, Martin, and Kelner (1999) when they asked seriously ill patients about their views regarding end-of-life care. "(Interview) participants were adamant," the researchers wrote in their study report, "that they wanted to retain control of their end-of-life care decisions while they were capable of doing so, and that they wanted the proxy of their choice to retain control if they became incapable."
In the TCPC Program, patients maintain a sense of control over their lives by expressing their preferences for palliative and end-of-life care in a written plan of care. Developed within a week of admission, the care plan marks the start of the patient's palliative care journey. Updated at regular intervals thereafter, it provides guidance for the end of the journey as well. Continual use of the plan of care enhances communication among the patient, family, and healthcare providers, which in turn helps ensure quality of care.
A palliative care nurse drafts the plan of care based on a comprehensive in-home assessment of the patient and family. This assessment helps patients establish personal goals and allows for assessment of patient and family support systems. It also fosters an exchange that "can promote the development of a caring relationship between nurse and patient (Griffie, et. al, 1999)." During the assessment, patients and their family members have an opportunity to both receive and provide important information. In discussions with the nurse, the patient and family learn about the goals and services of the TCPC Program, find out more about the patient's illness and prognosis, receive education and instruction in managing the patient's care at home, and obtain information about advance care directives and the process of designating a healthcare proxy. In those same discussions, the nurse learns more about the patient and his or her family: What are the patient's preferences for treatment and care? What ancillary services are needed to support the family? Are there ongoing needs for education and instruction? The nurse also obtains information via a medical history review, a physical assessment, a home safety assessment, and a medication review.
Taking into account all this information, the nurse, in conjunction with the IDT, drafts a plan of care, which is reviewed, discussed, and revised by all IDT members, including the patient and family. The care plan must include an assessment of the patient's needs, treatment goals, designation of the primary caregiver in the home (or an alternate plan), and identification of scope and frequency of services. The palliative care physician must sign each plan to indicate approval. The care planning process does not end here, however.
A dynamic process, it is ongoing and changes as the patient's and family's needs change. At least every 60 days, and more often if necessary, the IDT reviews and updates the plan of care to ensure that it continues to reflect the patient's personal preferences, treatment goals, and service needs. These revisions also document the provision of IDT interventions. Once approved by the IDT and signed by the palliative care physician, all services must be provided in accordance with the most current plan of care. An IDT nurse ensures that the new plan of care is filed, along with the patient's medical records, in a binder that is left in the patient's home, so that all IDT members have easy access to information they need.
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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.