Chapter 19 Palliative Care: End of Life

For some clients, the process of providing artificial nutrition and hydration to avert cachexia and dehydra- tion is so onerous that the benefits are inconsequential or meaningless (35). To others, not to intervene is unacceptable and tantamount to murder (65). The choice lies in doing what is in the client’s best inter- ests, after the goals to be accomplished have been con- sidered and the expected benefits and burdens have been analyzed by the client, the family, and competent health care professionals (66-68). There are many reasons why clients and their families choose or do not choose to initiate, withhold, or withdraw artificial nutrition and hydration.

CASE LAW AND FORGOING OR DISCONTINUING NUTRITION SUPPORT

Case law rarely provides definitive answers to the question of whether or not to provide nourisment to a client. A position paper of the Academy of Nutrition and Dietetics titled “Ethical and Legal Issues in Feeding and Hydration” reviews relevant cases that address ethical, medical, and legal issues (2). Guide- lines on the ethical considerations to forgo or discon- tinue nutrition and hydration have been written by numerous organizations (24,69-74). The following three legal opinions have been expressed in US courts of law and are practiced in many other countries as well (2,44,46,75-78):

1. Withholding and withdrawing nutrition support have the same ethical significance.

2. Artificial nutrition and hydration is considered medical therapy and can be refused by competent clients and surrogates of incompetent clients under certain circumstances.

3. Client autonomy is a guiding ethical principle.

When a client dies after artificial nutrition and hydra- tion are withdrawn, clinicians generally view the cause of death as being the underlying disease or condition, not the withdrawal of the nutrition support. In the past, before the availability of nutrition and hydration support technology, clients would have died of their disease. Advances in nutrition and hydration support technology have not changed this; therefore, absence of such support is not the specific cause of death. This concept is very important to emphasize with clients and their families. Families already carry a sufficiently heavy burden without adding to it the burden of guilt due to a decision to withdraw nutrition and hydration. The publication Hard Choices for Loving People is a helpful ally when discussing nutrition support with ter- minally ill clients and their families (79). Other

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resources have been developed by nonprofit organiza- tions (80-82). Within the same context, withholding and with- drawing artificial nutrition and hydration are consid- ered to have the same ethical significance, even though the removal of artificial nutrition and hydration may be psychologically and emotionally much more difficult (24). This should not, however, lead to withholding this therapy in an attempt to avoid a difficult decision regarding withdrawing support in the future (66,83).

SUPPORTIVE NUTRITION CARE PROGRAMS

Health care facilities and programs should develop supportive nutrition care programs to guide providers in caring for clients who choose palliative care (84). Dorner’s recommendations for developing a nutritional risk protocol for nursing home residents at risk for involuntary weight loss and dehydration are applicable to developing a supportive nutrition care protocol for palliative care clients (85). Dorner recommends that providers do the following (85):

1. Carefully review the state’s advance directive laws.

2. Include best-practice guidelines for maintaining adequate nutritional status.

3. Include guidelines on weight tracking and weight loss interventions.

4. Note the steps the team will take if significant weight loss occurs.

5. Include the client and family in the decision- making process.

6. Note what options the team will consider for con- tinued weight loss.

7. Include as many team members as possible in developing and finalizing the protocol.

8. Define the team’s protocol for when advance directives will be reviewed and at what point they can legally be followed.

Hospice and palliative care organizations are increas- ingly considering the merits of creating written policies to guide clinicians’ responses to patient requests for information and support for voluntarily stopping eating and drinking in order to hasten death (86). Providers must listen carefully to each individual’s wishes about withholding nutrition and hydration, explain all options available, and describe the benefits and burdens of each option (2,14,24). If the resident is unable to make informed choices, a surrogate decision-maker who is familiar with the individual’s wishes should assist the care team in making decisions that are individualized and resident centered (24). When the decision is made to provide palliative care without aggressive nutrition