Hospice Patients Alliance: Consumer Advocacy


One of the major differences between hospice care and other forms of health care is the very explicit designation of the family/caregiver unit as an integral part of the process. While the hospice's plan of care for your loved one's terminal illness is obviously the main focus of the hospice's efforts, the plan of care must address the family/caregiver's needs as well.1 The mission of hospice care is to help the family get through this difficult time while providing all the care needed by your loved one.

At the time of admission to hospice, the RN case manager or admission staff will assess the family's needs for various types of services. As time goes on, the RN case manager may become aware of new needs which have arisen, and arrange for further assistance to the family. If the terminal illness is causing financial challenges, the hospice social worker can make arrangements to find assistance from many sources. Emotional difficulties can be addressed through informal or formal counseling, either in private individually or with the family as a group. If legal advice is needed, the hospice may help you locate a knowledgeable attorney. Bereavement counseling must be provided to you for up to one year after the death of your loved one. 2

While some may state that they "don't need any help," the loss of our close family members can be so traumatic that some survivors suffer from a full clinical depression. The emotional pain may be too deep to admit to ourselves or others. Even if it doesn't come to full depression, counseling can be extremely helpful. Sometimes we don't really feel the full brunt of our loss until months later...we can shield ourselves from the pain in many ways as a "defense mechanism." But time has a way of bringing the truth of the matter to the fore. The deathof a loved one is something we may get used to, but we may not fully "get over it" completely. The loss is real and will always be there in some way or another. Bereavement counseling can make a great difference in helping you in such dsifficult times.

1 The Code of Federal Regulations at 42 CFR 418.58(c) states "The plan must include an assessment of the individual's needs and identification of the services including the management of discomfort and symptom relief. It must state in detail the scope and frequency of services needed to meet the patient's and family's needs." [emphasis added].

2The Code of Federal Regulations at 42 CFR 418.88 states "Counseling services must be available to both the individual and the family. Counseling includes bereavement counseling, provided after the patient's death as well as dietary, spiritual and any other counseling services for the individual and family provided while the individual is enrolled in the hospice...There must be an organized program for the provision of bereavement services ...[which] should reflect family needs...up to one year following the death of the patient." [emphasis added].

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