End-of-Life Caregiving

Here are some issues and approaches worth considering in an end-of-life caregiving situation.

Trust Yourself

If you have provided primary care to a loved one for a longer period of time, you are probably the person most equipped to determine what needs to be done now, and to fulfill his or her wishes. Trust in your ability to handle these additional responsibilities, but also realize that some things are out of your control.

If you have been placed into an end-of-life caregiving role by a crisis or event, try not to second-guess what you are feeling. Understand that conflicting emotions—fear, anger, grief, and helplessness—are natural, and have confidence in your own judgment

Understand the End Stage

Having some knowledge about what lies ahead—physically, emotionally, and spiritually—can make a real difference as you and your family prepare for the death of your loved one. Talk to your loved one’s doctor, nurse, and other members of the health care team about what to expect. Discuss these issues with family members, friends, children, and visitors when appropriate.

Connect with Support Structures

This includes family, friends, clergy and ministers, professionals, volunteers—anyone and everyone who has something to offer. Take advantage of help wherever you can find it, and avoid the all-too-common tendency of caregivers to become isolated.

Keep in mind, too, that most people want to help, but may be uncomfortable making the offer or with the circumstances. Make it easy for them. Let others know what they can do, in a concrete, practical way.Review Legal and Financial Arrangements

This may include wills, powers of attorney (both financial and healthcare), “no code” or do-not-resuscitate orders, as well as the location and disposition of important documents and proofs of ownership. Having all of these measures in place and up-to-date will spare you and your family time and difficulty.

Maintain Your Health and Well-Being

It’s easy to lose sight of your own needs and requirements during this time. Do what you can to maintain balance in your own life—physically, spiritually, and socially. If you feel selfish or guilty for spending time on yourself, keep in mind that no one can draw water from an empty well.

Evaluate Hospice

Hospice services have a high success rate in battling pain and helping terminal patients remain comfortable. Some families may have a difficult time with the idea of stopping efforts to combat a disease, but it’s important to consider all care options. Because hospice patients are cared for by a team (physicians, nurses, social workers, counselors, clergy, therapists, and volunteers), you may want to look at and interview services in advance, to choose a group that the family is comfortable with.

“Palliative care” programs likewise focus on maintaining comfort, but there is no expectation that life-prolonging therapies will not be used. And while hospice services commonly take place in the home, palliative care teams usually work in facilities or institutions.

Pre-Plan if You Can

There are many steps that can and should be taken well in advance of a loved one’s final days. These include a letter of last instructions (in which your loved one sets down his or her wishes for the funeral or ceremony), as well as pre-planning with a funeral home. Many choices and details can be finalized beforehand, when everyone is thinking clearly. This offers the additional reassurance that matters are being carried out in accordance with your loved one’s wishes.

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