Bringing education into end-of-life issues
End-of-life issues should be discussed while people are in good health. Just as people prepare for birth, it is important to prepare for death. The topic needs to be part of the health care discussion, says Christin (Coco) Regas, MSW, the consumer programs and services director for the National Hospice and Palliative Care Organization in Alexandria, VA.
There are many details to consider. Advance directives help take the guesswork out of medical decisions by providing such information as whether a person wants to be dependent on breathing machines or tube feeding. It would address whether or not a person wanted to be cared for at home if possible when seriously ill or move in with a family member.
Planning should cover all end-of-life issues from financial considerations to burial arrangements, says Regas. It is important to educate people about planning for end-of-life care because most have not addressed it or articulated their wishes. "Most people don't like to talk about it until they need to, but it can save a lot of heartache for everyone involved from the health care professionals to loved ones if people make their wishes known," says Regas.
The uncertainty can be avoided, even if people recognize they don't want to deal with end-of-life issues, and giving power of attorney for health care decisions to a family member or friend, she adds.
Preparing for the end of life also should include familiarity with the services available in the community in which a person lives. For example, people should know what type of home health care is available, whether or not a meal delivery service in their area provides hot lunches, and what type of long-term care facilities are available. Hospices are a good source for such information, says Regas. Your organization often has a lot of information about the local resources, and you can offer guidance on the best way to select services. For example, you might suggest questions to ask when evaluating long-term care facilities.
Make hospice familiar
Hospice should be one of the resources people are informed about before they need to use it to help care for a terminally ill family member, says Regas. You can explain that the criteria for admission is usually a life-limiting diagnosis with a prognosis of six months or less.
Yet often education about hospice services takes place when care is required. "If it is a new diagnosis and a new referral to hospice and the family is in somewhat of a state of shock or upset, the evaluation team may not go in depth about end-of-life issues," says Regas.
In such cases, the discussion on how hospice can assist the patient and family in determining their wishes for the end-of-life experience would be postponed until a later date.
Families should know that hospice provides extra support for terminally ill patients and caregivers with the medical team volunteers, social workers, chaplains, and bereavement or grief counselors. "Hospice is a holistic model of care that can provide extra support at a time when patients and their families need it most," says Regas.
Families need to know they can have as much or as little help as they want when they become involved with hospice. They might not want a lot of unfamiliar faces in their home at the end stage of life, but knowing there is someone to answer questions 24 hours a day, or assist if needed, provides a sense of relief and comfort, says Regas.
It important to tell families that many hospice programs offer palliative care programs for people who have a serious illness but will not necessarily die in the next six months.
The subject of end-of-life services can be difficult for people; therefore, it is best to bring up such matters well in advance of the need. "We encourage physicians and health care professionals to start talking about end-of-life care long before it is needed. They should introduce the concept and talk about it little by little, visit by visit, so it is not such a shock if it is needed in the future," explains Regas. [Editor's Note: November has been designated as National Hospice Palliative Care Month.]
Source
For more information about end-of-life issues and hospice care, contact:
- Christin (Coco) Regas, MSW, Consumer Programs and Services Director, National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. Telephone: (703) 837-3134. E-mail: [email protected]. Web: www.nhpco.org and www.caringinfo.org.
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