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CHAPTER 16   Palliative and End-of-Life Care
TOPICS   Introduction ~ Reducing Suffering ~ Retaining Control Over Decisions ~ Palliative Care and Hospice Care ~ Peace and Resolution
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At the Bedside of a Dying Person

Just as the beginning of life begins with what doctors refer to as "active labor," so the ending of life begins with "active dying," during which signs of approaching death develop. Once active dying has begun, the focus of care often shifts from treating medical problems to providing immediate comfort. Family members may begin to gather to visit, care for, and say goodbye to the dying person. Nonetheless, many people are unsure of what to do when at the bedside of a dying person.

The actively dying person is often minimally responsive or even unresponsive (comatose). Nonetheless, people at the bedside should assume that the dying person can hear and is aware of those around him. This assumption is based on the experiences of people who have been sedated or in a coma but who could describe events that occurred in their presence. Loved ones can take the opportunity to express thoughts that they have been meaning to share (for example, "I love you" or "You were a wonderful mother") and to say goodbye.

Loved ones frequently take comfort and pride in the personal care they are able to provide to an actively dying person. Keeping the dying person clean, changing his position occasionally to enhance comfort or to help with clearing secretions, and keeping his mouth clean provide comfort to the caregiver as well. Loved ones may also provide comforting touches or massage or apply skin moisturizers.

Helping to create a peaceful and soothing atmosphere is an important aspect of care. Whether a person is dying at home or in an institution (for example, a nursing home or hospital), filling the room with the comforting, familiar sounds of loved ones' voices or favorite music should be encouraged. Family disagreements or discussions that might distress the dying person should be avoided. Pastoral visits from clergy members may be very important and can provide tremendous support for many families.

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