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Palliative Care Perspectives : Chapter 11: The Final 48 Hours : Who Is the Patient?

The phase of active dying often seems more difficult for families than for the dying themselves. Most people have never witnessed a death before. All sorts of fears, anxieties, and concerns well up and need to be addressed. Most of all, families need our support during this difficult, exhausting time. Families, loved ones, and even clinicians become the patients and look to us for support and guidance.

Elsewhere, I addressed concerns that commonly arise. It is common for families to question why more aggressive, invasive care is not being given: "Why aren't you using an IV?" "What about antibiotics?" "Shouldn't we move him into intensive care?" These issues may or may not have been already addressed, and even if they have been, second thoughts are common. Families, who have trouble accepting that dying is happening, may accuse staff of clinical errors or negligence. They can become very angry. When being accused of purposeful neglect or of knocking out Grandpa with morphine, it can be difficult not to overreact. It may help to realize that from the family's point of view, it is far easier to tolerate the idea of clinician error or incompetence than the fact that a loved one is dying. Both the cognitive aspect of these accusations (why we are not using an IV, etc.) and the affective component ("You seem very angry; it must be very hard seeing your loved-one like this") need to be addressed (see Chapter 8 on communication).

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.