Hospice Care for a Dying Parent: What Adult Children Should Know

Published In Blog

Adult children face difficult decisions when their parents are approaching the end of their lives. An advancing cancer that no longer responds to treatment is one example of a health condition that leaves parents and their children with few options. The family’s primary goal is usually to make the parents’ last days as comfortable as possible.

Parents in their final stages of life typically express a desire to die in the comfort of their own homes. Survey results show that, given the choice, 71% of Americans want to die at home. No other option — death in a hospital, in an inpatient hospice facility, or in a nursing home — appealed to even 10% of Americans.

Statistics show that almost 40% of Americans who died from a disease in 2003 were in a hospital at the moment of death. Only about 24% of deaths from disease occurred at home. By 2017, only 30% of deaths from disease occurred in a hospital, while almost 31% occurred at home. The statistics held steady whether the death was caused by heart disease, cancer, respiratory failure, dementia, or stroke. 

Hospice Case Options

Hospice care is designed to ease the transition to death. Hospice care is not designed to prolong a patient’s life. Hospice care differs from palliative care, which seeks to increase a patient’s comfort while still treating a serious disease. Hospice care is provided when a parent is no longer responding to medical treatment. Patients usually become eligible for hospice care when they are expected to die within six months.

Hospice care can be provided at home or in a hospice care facility. Home hospice care may be the right choice when parents want to die at home. Friends and family are often scheduled in shifts to spend time with the patient. They provide the large majority of the care that the patient receives.

Home hospice care is provided by a team of trained workers who supplement the care provided by family and friends. They generally instruct family members about the best ways to meet a patient’s needs. Hospice team members include nurses who monitor the patient’s medical condition and report to a treating physician. The physician may revise pain medications based on the nurse’s reports.

Home health aides may also be part of the home hospice care team. They may help the patient eat, bathe, and use the bathroom. However, government data suggests that nurses and aides provided by a hospice service spend only about a half hour each day with the patient. While relatives take primary responsibility for helping a dying parent with those activities, home health aides might provide respite care so that family members have time to attend to their own needs.

A hospice facility may be the better choice when a parent is living alone and family members are not available to provide routine care. Inpatient hospice care might also be appropriate when the patient needs greater medical care — usually related to pain management — than a hospice team can provide at home. Hospice facilities are staffed by on-site physicians, skilled nursing staff, and various therapists who work to maximize the patient’s comfort. 

A hospice facility might be located in a nursing home, an assisted-living facility, or a hospital. A hospice facility might also be a freestanding hospice center. Adult children should investigate local options if a parent chooses to spend her final weeks in a hospice facility.

Making the Choice

Home hospice care allows a parent to die in a familiar, peaceful setting. However, the experience can be difficult for family members. Losing a parent is hard under any circumstances, but watching a parent suffer and die is an emotionally taxing process. 

Caring for a dying patient may include administering suppositories and cleaning bodily wastes — unpleasant tasks that can be embarrassing for both parent and child. Parents who suffer from dementia may impose additional demands on children who act as caregivers. 

The burden of providing hospice care is stressful for spouses and adult children. Some people that have gone through the process question whether they would want to receive home hospice care. While adult children remind themselves that their parents made sacrifices to raise them, many adult children of dying parents are raising their own children and find the process of providing hospice care to be overwhelming.

Hospice facilities relieve some of the burden that adult children would bear, but patients in a hospital facility do not have the comfort of dying at home. On the other hand, patients who are receiving heavy doses of pain medication may be unaware of their surroundings in the final days of their lives.

Hospice facilities might not be easy to find. Because they depend on a steady intake of patients who will probably receive care for less than six months, freestanding hospice facilities outside of metropolitan areas tend to be less profitable. Patients in rural areas may need to look for nursing homes or hospitals that provide inpatient hospice care. Adult children can begin a search for hospice providers (both home-based and facility-based) by visiting the National Hospice and Palliative Care website.  

Leave a Reply