Caregiving at the End of Life
Caregivers face many difficult tasks as their loved one gets closer to death — from emotional support to practical issues such as finances and directives about life support.
“Maintaining a dying person’s quality of life is important,” says Patricia A. Grady, PhD, director of the National Institute of Nursing Research, Bethesda, Maryland. “So, the best thing a caregiver can do is to find a trusted source of information about various options for end-of-life care.”
What You Can Do
- Educate yourself about end-of-life care options. “Look into options such as palliative care and hospice, asking what each offers, where services are provided, and how to pay for them,” says Grady. Ask your loved one’s health-care team for suggestions. You can also find information about services on the NIH SeniorHealth website, or at HELPGUIDE.org, which includes a section on end-of-life care.
- Talk to your loved one’s health-care provider. Grady suggests asking the following: What will happen in the coming days and weeks? Why are you suggesting this test or treatment? Will it bring physical comfort? Will it slow or speed the dying process? If my loved one takes the treatment or participates in this clinical trial, will it help others?
- Asked your loved one for his preferences. As early as possible, ask about specific preferences for care at the end of life, suggests Grady. The answer varies person to person and over time, she says: “The person who wanted everything possible done to prolong life may decide later to change focus to comfort.”
- Put advance directives in place. Directives may include a living will, which indicates your loved one’s wishes in case she is eventually unable to express them. A healthcare proxy is the selection of a person who can make healthcare decisions for your loved one if she cannot. A Do Not Resuscitate (DNR) order is your loved one’s written request that she not be revived if her heart or breathing stop. A healthcare provider must sign it. Physician Orders for Life-Sustaining Treatment express what specific treatment a patient wants at the end of life.
Discuss the options with your loved one so that she can decide on them and you can fill out the forms (available online) as soon as possible. Make sure the forms you print are applicable in your state. Keep a copy of each, and give copies to family members and your loved one’s healthcare team.
- Pick a family point person. Decide early what member of the family will communicate what your loved one wants to the health-care team. This doesn’t mean that others can’t be involved. In fact, it’s a good idea to have a family conference with the health care provider at which the doctor can talk about your loved one’s condition, what may happen next, and what the patient’s wishes and options are.
“You shouldn’t be afraid to ask for information and support,” says Grady. Ask health-care providers for updates on the condition, and ask what the options are as your loved one nears the end of life.
You can also discuss with medical staff and with your family how to handle various situations. For instance, what should be done if your loved one stops breathing, or if his or her heart stops.
Talking about and thinking through such issues in advance may add to your loved one’s comfort and may help all involved to be at peace with the measures taken and the decisions made at the time of death.