At the end of life, each story is different. Death comes suddenly, or a person lingers, gradually failing. For some older people, the body weakens while the mind stays alert. Others remain physically strong, and cognitive losses take a huge toll. But for everyone, death is inevitable, and each loss is personally felt by those close to the one who has died.
End-of-life care is the term used to describe the support and medical care given during the time surrounding death. Such care does not happen just in the moments before breathing finally stops and a heart ceases to beat. An older person is often living, and dying, with one or more chronic illnesses and needs a lot of care for days, weeks, and sometimes even months.
End of Life: Helping With Comfort and Care hopes to make the unfamiliar territory of death slightly more comfortable for everyone involved. This publication is based on research, such as that supported by the National Institute on Aging, part of the National Institutes of Health. This research base is augmented with suggestions from practitioners with expertise in helping individuals and families through this difficult time. Throughout the booklet, the terms comfort care, supportive care, and palliative care are used to describe individualized care that can provide a dying person the best quality of life until the end. Most of the stories in this booklet are fictitious, but they depict situations that reflect common experiences at the end of life.
When a doctor says something like, “I’m afraid the news is not good. There are no other treatments for us to try. I’m sorry,” it may close the door to the possibility of a cure, but it does not end the need for medical support. Nor does it end the involvement of family and friends. There are many places and a variety of ways to provide care for an older person who is dying. Such care often involves a team. If you are reading this, then you might be part of such a team.
Helping With Comfort and Care provides an overview of issues commonly facing people caring for someone nearing the end of life. It can help you to work with health care providers to complement their medical and caregiving efforts. The booklet does not replace the personal and specific advice of the doctor, but it can help you make sense of what is happening and give you a framework for making care decisions.