Midwives for the Dying

By Richard Gunderman
♥ jules/flickr

With the holidays approaching, it is a fitting time to think about dying. It has long been known that more people die in winter than any other season, but a 2010 review of nearly 60 million U.S. deaths showed that Christmas is the single most common day of death, with New Year Day close behind. Dying, like life, can go poorly or well, and those who know it well are in a position to make an important difference. In the last few decades a new type of health professional has emerged whose contributions to dying resemble—of all people—those of a midwife.

For millennia, midwives have cared for and assisted childbearing women throughout pregnancy, labor, birth, and the postpartum period. Particularly for women who have never given birth before, the support and experience of a midwife can reduce anxiety and confusion, decrease pain, and at least at times, even make the experience more peaceful. 

The parallels between birth and death are numerous and remarkable. Like birth, dying is often associated with pain, uncertainty, and fear. In both cases, there is lots of waiting, certain signs occur reliably, and the final timing is not predictable. In neither case are health professionals in control. In death as in birth, patience, kindness, and privacy can make the experience more healing, bringing out more of the good and less of the bad in people. And a health professional with appropriate training and experience can do a lot to help patients and families negotiate both transitions.

One person who regularly plays this role is Peg Nelson, nurse practitioner and director of pain and palliative services as St Joseph’s Mercy Oakland Hospital in Pontiac Michigan. Peg has been a nurse for thirty-three years and brings fifteen years of experience in palliative care to her patients. She is the recipient of numerous awards for her work, which she now regards as her life’s calling.

During a recent conversation with Peg, I had the opportunity to ask her about the difference a person who partners with a patient and family at end of life can make. Peg does not immediately call herself a midwife, nor does she use the related term doula. But she does offer a number of helpful insights from which everyone contemplating death or caring for a dying person can benefit.

It must be very depressing to deal with death all the time.

Of course it can be difficult, but most of us in this work don’t get depressed. One of my colleagues lost her husband, and for a while it was very difficult for her to function at all. But over time she learned to draw on her experience to help others, and now she tends to form a special connection with women who are going through a similar experience. 

Sure, you often feel sad, but you also feel privileged to participate in the love and support family members give each other. Although we deal with dying every day, we are not members of some doom and gloom club. In fact, there is a lot of joy in being able to make a difference and helping to fill the situation with caring and love.

But you don’t control death. Don’t you constantly feel helpless?

Not really. Once you admit to yourself that dying, like birth, is not something you can control, it frees you up to use your compassion to help people. For example, we can usually make dying patients comfortable and help them find ways to make the most of their remaining days. We are less like surgeons performing an operation ourselves than coaches helping someone else. And there is a lot we can control. We can always listen—really listen—to patients and families. We can always be with them—really with them—in the moment. And we can always care—really care for them—throughout the experience.

What does a good death look like?

It is important to recognize that there is no one right way to die. In some cases, the dying person is elderly, and their death is seen by both patient and family as perfectly natural, something everyone has been anticipating and preparing for, often for years. In other cases, such as motor vehicle accidents, death comes suddenly and unexpectedly, and no one is prepared at all. And of course every family is different. Some are distant and reserved, while others are very touchy feely. No matter what the circumstances, our mission is to care and help people find their best path.

What do you say to people who are just beginning to deal with dying?

There are some phrases that we tend to use a lot. I can’t tell you how many times I have said, “I wish things were different,” or “I’m so sorry.” Of course, you must not only say it but mean it. And even in the midst of shock and anger and despair, there are always healing things you can say. For example, I often hear myself saying, “You have such a beautiful family,” or “I am feeling a lot of love in this room.” It is not only pointless but harmful to pretend that dying is not happening. 

On the other hand, if you do it right you can help people find lasting meaning—even something beautiful in it. More important than anything we say is to listen—asking questions, being quiet and present.

How do you figure out what patients need?

You have to identify what is important to each person. There are some questions I always ask. One is, “What is the worst thing about this for you?” You might think you know in advance, but patients and families can often surprise you. Sometimes it is simple things that bother them—such as a need to see a pet, have a specific food or drink, or even just get some fresh air. These are easy to provide. But everyone is different. 

For one it will be pain, and as I said, there is always something we can do to decrease discomfort. For another it will be fear, and we can always take time to listen and help explain what is happening. For others, it is the worry that they will become a burden to their family and friends. But in many cases, we help them discover how much their loved ones really want to care. 

It is important to help patients and families recognize that it is not all darkness. There is an immense bright side. For example, I always ask patients and families what they are hoping for. At first, they may have difficulty saying, and their answers often change over time. Some will say that they are hoping for a miracle cure. Others tell us that they want to die at home. Others want to see someone again, or make it to a particular milestone, such as a grandchild’s graduation. Whatever it is, we do our best to help people live their remaining days for what matters most to them.

You must encounter some really heartbreaking situations.

Of course, but every such situation can be handled poorly or well. I still vividly remember the first time I sat with a young man whose wife had just died. “She never said goodbye,” he said, crying. “I wish she would’ve.” In such a situation, you could just agree and say, “Yes, it’s really too bad.” But instead, we talked about why. As we talked, he came around to the idea that she had never said goodbye because, for her, doing so would have seemed like giving up, and her way of loving was never to give up. It still hurt deeply, but through our conversation he found some peace.

What are some of the biggest misconceptions you deal with?

One is the idea that death always involves physical suffering. In most cases, we can do a lot to alleviate problems like pain and nausea. Another common problem are misunderstandings about the nature of the disease and its prognosis. One of our most important missions is education—we cannot make the disease go away, but we can make sure no one suffers needlessly because they misunderstand the situation. The third big misconception is that people can’t talk about it. We relieve a lot of suffering simply by helping families open up about their love for one another. 

What about your work reminds you most of the work of traditional midwives?

Like birth, death is one of life’s most important transitions. As medicine has advanced, sometimes we have let the technology overwhelm the human dimension. We aim to help people die in a more natural, healthier way. Someone with advanced cancer should not die with someone pushing on their chest. Just as women have been giving birth forever, so people have always been dying, and our mission is to help them do it as comfortably, naturally, and meaningfully as possible. Just as we need help coming into the world, we need support and love going out of it. 

This article available online at:

http://www.theatlantic.com/health/archive/2013/12/midwives-for-the-dying/282344/