[MOL] Info. for our Caregivers..... [00829] Medicine On Line

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[MOL] Info. for our Caregivers.....

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Health Focus: Comforting A Dying Person

August 2, 2000

Knowing what to expect and being prepared for the death of a loved one can make this difficult end-of-life transition a little less traumatic.


Until the 1940s, most people died at home, surrounded by friends and family. But with the dramatic advances in medical technology that occurred in the mid-1900s, death and dying became increasingly removed from the lives of Americans. The primary location for death changed to hospitals and nursing homes, often out of sight of families and loved ones.

In recent years, however, more and more people are dying at home again — primarily because they choose to — and their families aren't always sure how to act or what to say. Knowing what to expect and being prepared can make this difficult end-of-life transition a little less traumatic.

Giving Comfort, Giving Care

"Probably the most important thing is advance planning," says Michael Harper, M.D., instructor of medicine and medical director for Beacham Ambulatory Care Center at Johns Hopkins. "Before it's too late, the person who's dying should make plans for what will happen as his life comes to an end — the things he wants done, as well as those he doesn’t want done." It is also important to remember that despite this advice, many people simply choose not to make such plans.

For example, does the dying person want lots of company, or would he rather be left alone? Should family members share sensitive information, or should they withhold it? Will there be aggressive medical care, or will death be allowed to come naturally? These are all things that are best decided in advance.

"I often recommend that people who are dying name a health care agent, maybe someone in the family who will make decisions for them if and when the time comes that they can no longer decide for themselves," says Dr. Harper. "It certainly can help families cope when there are some plans laid out and they know what their loved ones have chosen."

Everyone has different needs, of course, but some emotions are nearly universal among the dying. To make those last weeks or months as comfortable and stress-free as possible, here are a few points to keep in mind:

  • Your presence is everything. "One of the things dying people are afraid of is abandonment," says Dr. Harper. Having people around — talking, watching movies or simply reading together — can give tremendous comfort. Of course, Dr. Harper adds, some people would just as soon be left alone. The only way you’ll know for sure is to ask.

  • Be prepared to listen. Those who are dying may want to share their fears, discuss their uncertainty about the future and talk about their concerns for those they’re leaving behind. Keep in mind, however, that men and women, whether they’re the caregivers or those receiving care, often express themselves in different ways. Men, for example, have a tendency to give advice when someone really just wants them to listen. Women, on the other hand, may push people to "let it all out." "You need to ask yourself what your spouse or your father or your mother would want, not what you want," says Dr. Harper.

  • Be honest and share information. Family members naturally want to protect their loved ones, and sometimes they do this by withholding difficult information — news about lab test results, for example, or practical details about real estate or finances. It’s usually better to be forthright. People who are dying need to retain a sense of control, and this means being included in family discussions.

  • Give a lot of reassurance. "In surveys, when you ask people what they fear most later in life, death is rarely number one," Dr. Harper says. "What people usually say is, 'I don’t want to be a burden on my family.'" Take the time to let the dying person know how much you value him and how grateful you are for the opportunity to spend this last time together.

  • Settle unfinished business. Everyone has regrets — things they wish they'd done, old rifts they wish they'd healed, places they wish they'd seen. It's not always possible to fulfill last wishes for a dying person, but sometimes you can. So it's worth asking if there's anything you can do.

  • Respect the need for privacy. "People often say, 'I don't want anyone to see me like this,'" says Dr. Harper. "You just have to be attuned to what the individual needs."

Care For The Living

Dying takes a toll on everyone, not the least on those who are left behind. It doesn't make sense to run yourself ragged during the last weeks or months, says Dr. Harper. Get some help, and do it early.

"There's a great underutilization of hospice care," Dr. Harper says. "Most people who are enrolled in hospice programs stay only a few weeks because they came so late. This is unfortunate because hospice care provides grief counseling along with lots of additional benefits." In addition, hospice programs are paid for by Medicare, and they include both inpatient and at-home care, as well as care for the living. Your doctor can recommend a program in your area.

The process of dying is generally much longer than it used to be because of improved medical care. So it's worth looking for ways to gets through this period with your emotions and even your health intact. You can do several things to keep your peace of mind:

  • Realize that no matter how hard you try, you can’t do everything. Make sure other family members know what you’re going through. Get them involved in the daily care — changing the linens, shopping for groceries or keeping the dying person company.

  • Be direct about conflicts. Sometimes you just can't do what the dying person wants. It's important to be forthright about your limitations. Otherwise, resentment and anger are sure to simmer — and the dying person will perceive them, whether they’re spoken or not.

  • Prepare yourself for feelings of guilt. Nearly everyone who cares for the dying goes through phases of guilt and anger. You may feel guilty because of things you wish you hadn't done, because of old wounds or because you found yourself wishing it all would end. It's normal to feel this way. So don't be hard on yourself. Understand that feelings of guilt are simply part of the process.

  • Get ready for the end. Even when people have prepared for the death of a loved one who has been chronically ill for months or even years, the end nearly always comes as a shock to the survivors. You may want to ask your doctor to explain how to recognize when death is near. It will give you time to prepare yourself — and your family — for this last, sad stage of life.
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