Over the weekend, I watched “The Descendants.” The film portrays a family’s struggles in coming to grips with end-of-life decisions for the mother, who is unconscious and on life support. But what if she was awake and had an incurable disease? What sort of end-of-life conversations should take place?
Families and health care personnel need to know the priorities and preferences of individuals nearing the end of life. Various research studies have explored what patients, medical staff and family members see as the components of a good death.
A Japanese report, Good death in cancer care: a nationwide quantitative study, surveyed people under palliative care for cancer regarding end-of-life concerns. Patients described the components of a good death as including physical and psychological comfort, dying in a favorite place, a good relationship with medical staff, maintaining hope and pleasure, not being a burden to others, a good relationship with family, physical and cognitive control, environmental comfort, being respected as an individual and life completion.
A study out of North Carolina — “Patients, family members, and providers identified 6 components of a ‘good death’” — appeared in Evidence-Based Nursing. Nurses, social workers, hospice volunteers, chaplains, physicians, patients and bereaved family members listed these elements of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others and affirmation of the whole person.
Doctors may not always understand how to make the most of conversations about death with patients and their families. In End-of-Life Care Discussions Among Patients With Advanced Cancer: A Cohort Study, 73 percent of these patients with stage IV lung or colorectal cancer discussed end-of-life care with medical personnel. Most conversations took place one month before death and primarily involved a general medical physician or medical oncologist. Conversations typically occurred during short hospitalizations instead of during stable periods of outpatient care. Most frequently these conversations focused on hospice care and resuscitation, while palliative care and other venues for dying appeared as less common topics.
End-of-life discussions are difficult but important conversations to have. If caregivers can find out what the person who is sick considers to be a good death, then they can better steer these encounters with doctors to the benefit of everyone involved.
In addition, caregivers and adult children can help elders clarify legal and financial issues before the end comes, with tools such as a Power of Attorney, health directive and will. If a health directive or living will is on file, the family and health care providers know about a dying person’s wishes.Posted in Caregiving, Death | 1 Comment »
Tags: Caregiving, Death