THERE may come a time when you can’t speak for yourself because of severe illness or injury. When that time comes, what would you want to have happen, if you could make your wishes known to your family and health care providers? Now is the time to take the opportunity to state those wishes in a document called an advance directive.
You may be reading this because you or a loved one is dying, or because you want to prepare for the future. You may be curious about caring for terminally ill patients or you may have recently recovered from a serious illness, suffered a loss in your family or watched a friend nurse her mother through her final days.
Whatever your inspiration, it is important to begin thinking about some big questions:
* If you were too sick or injured to express your wishes, who would make decisions about your care? Have you told this person?
* If you were too sick or injured to express your wishes, who would make decisions about your finances? Have you told this person?
* Given a choice, would you rather die at home, in a hospital or in a nursing home?
* Would you want to be kept alive as long as possible, even if that meant spending your final days in an intensive care unit, and even if you were not conscious?
* If you were terminally ill, would you want enough medication to relieve your pain, even if it were to quicken your death?
* Under what circumstances would you consider your long-term quality of life so poor that you would refuse life-support or resuscitation?
* Is your doctor aware of your wishes regarding end-of-life care, and if so, are your wishes reflected in your medical chart?
* Is your family aware of your wishes and would they respect them if you were unable to make decisions for yourself?
* Are you familiar with the services provided by hospice organizations?
* What, if any, spiritual support would you like if you became terminally ill?
Adults have never clearly explained to loved ones how they wish to be cared for during their last months and weeks of life. Without this type of communication, family members can be left with making tough decisions during a time of extreme stress.
While coping with the dying process is never easy, thinking about, discussing and writing down your wishes can help make this time less traumatic and less stressful for your loved ones. Write a living will to make your wishes about specific medical treatments known. Write a durable power of attorney document for health care to appoint someone you trust to make health care decisions for you if you become incapacitated.
Also, write a separate durable power of attorney document that appoints someone to oversee your finances. Speaking about your desires in advance can help ease the emotional and financial burdens loved ones shoulder as they make decisions on your behalf. If you discuss end-of-life care with your parents while they are healthy, it may actually give them some peace of mind.
Caring for a terminally ill loved one is often a wrenching experience. As the baby-boom generation enters its golden years, these experiences can only become more widespread. According to a landmark study published in the New England Journal of Medicine, society seems ill-prepared for this trend. The study is one of eight research components jointly funded by the Commonwealth Fund and the Nathan Cummings Foundation. Among the study’s findings:
* Wives, daughters and sisters are the primary caregivers for millions of terminally ill patients in this country. They often serve as the sole providers of an array of homemaking, transportation, nursing and personal care needs.
* Less than 20 percent of patients received paid caregiving services in addition to family assistance, and the proportion of assistance provided by non-family volunteers was negligible.
But the demographics of families are changing: More people need to work full time, the divorce rate continues to be high, people are living longer and more people are moving to different parts of the country. These factors make it more difficult for family members to provide care.
As a result, it is likely that an increasing number of terminally ill patients will rely on paid caregiving assistance. The problem then becomes who will pay for these services once family members are no longer available to provide them? According to Emanuel, this is an issue that insurers and health care policy makers will have to consider for the baby-boom generation. In some cases, the burden of caring for a terminally ill relative may be too much. It may tip the balance to where it’s overwhelming for the caregiver. In these cases, it often makes sense to consider putting the patient in a nursing home or other health care facility. The following are some tips to help primary caregivers cope:
* Rest. Don’t let caregiving become your full-time job. Use hospice services. Talk to a medical social worker about community resources that are available to help. Ask friends or other family members to take your place for a day or a half-day every week. And don’t use that time to run errands, either. Do something for you. Go to a museum, take a day trip, see a movie, dine in a restaurant, go clothes shopping, play your favorite sport or pursue a hobby.
* Communicate with other caregivers. There are hundreds of caregiver support groups throughout the country. Some are sponsored by hospitals and community centers. The Internet has chat rooms, discussion groups and Web sites devoted solely to supporting caregivers.
* Record the patient’s life story. Ask your loved one to talk about their life, and record the conversation. Use a simple question-and-answer format, where you write out some questions in advance. Use short, open-ended prompts, such as “What are your earliest childhood memories?” “Tell me about your wedding day,” and “How would you like your grandchildren to remember you?”
The News, 8/7/2008