Person-centered care at the end of life

I remember, years ago, when somebody died in a nursing home, residents would be moved to a room or doors would be closed so that the body could be wheeled out of the building without being seen. Times have changed … now we display photographs and hold services or ceremonies to remember residents who have passed away. But how well are we doing at recognizing that for many of our residents, this will be their last home and, therefore, the place where they spend the end of their lives?

Surveys of older people indicate that they are not afraid of death, but they are worried about dying. We must ask ourselves: Do we help people experience the end of life in a way that brings closure and maturity? Or do we treat death as a care failure that we should be ashamed of?

One of the reasons end-of-life care is fraught with so much discomfort is because of our roots in healthcare, which suggests that someone dying while in our care is a failure of that care. With the emphasis in long-term living circles on the “living” part of our job, we may be thinking even less about how to handle end of life. Of course, we need to recognize that every resident is still living and honor their strengths and preferences as much as we can. But there will come a time when residents have reached the end of life. And we need to be willing to recognize and honor that rather than deny it and stop our person-centered focus. The personhood of a dying resident is more important at that time than ever. Those of us who provide the last home our residents may know must acknowledge that dying in that home is often a person’s wish. To comfort and recognize each person at this time is one of our greatest challenges and gifts.

Dr. Dan Morhaim, in his new book, The Better End, says that at this point in human history, “We can approach death with a greater degree of consciousness and information than any of the billions of human beings who preceded us.” He examines the choices and issues involved in creating a better end-of-life experience for elders, their families and caregivers and he urges careful planning and open communication. He notes that the better end means that we can take advantage of the medical advances of our age, but that decisions about how much and what type of care are up to the individual. It is our responsibility to foster this process and be in communication with residents and their families about end-of-life care.

Dr. Maggie Calkins, an Erickson School faculty member, has firsthand experience with this type of conversation. Her father, Hugh Calkins, 87, recently decided that he would no longer seek medical treatment for a variety of ailments and conditions that have put him in and out of the hospital over the past year. This was difficult for his children to hear, Maggie says, but “now that he’s made his wishes known, he’s more content.” He tolerates caregiving better, she says, because “he knows that they’re not pushing him beyond what he wants to do.” Although it’s sad to consider, Maggie understands that her father is taking control of his life, and “working out in his mind how he wants to choose to live the remaining time that he has.”

Dr. Ira Byock, a nationally recognized palliative care physician at Dartmouth Hitchcock Medical Center (www.dyingwell.org), asserts that we must stop avoiding discussions and acknowledgement of death, stop denying mortality—especially in the last phases of a person’s life. In openly recognizing that dying is the last part of life, he says, “we can live emotionally authentic, healthier and more joyful lives.” Our role as caregivers in this process of becoming more open cannot be underestimated. We have the opportunity to bring the human experience back to the end of people’s lives by making sure we focus on the person, and not the procedures, as they let go of life.

Avoiding the fact that a person may be at the end of life doesn’t make it go away. Elizabeth Kubler-Ross, in her book, On Death and Dying, presents us with what was then a novel theory—that patients knew they were dying and wanted to acknowledge their situation, to talk and affirm their lives. But we often don’t know how to do that, leaving people feeling very lonely. What they need to feel is connected and supported and affirmed at the end of their lives. We avoid prolonging the emotional connection with them to protect ourselves and get busy with their physical care. But the quality of the relationship needs to affirm that we value the person. This may be the greatest gift and the best care we can give, and it is success, not failure.

 Judah L. Ronch, PhD, is the Dean of and professor at the Erickson School, University of Maryland Baltimore County, which offers undergraduate and Master’s degrees in Management of Aging Services as well as online and Executive Education programs and customized industry training. He can be reached at JudahRonch@UMBC.edu or visit www.erickson.umbc.edu.

Bibliography

Kubler-Ross E. On Death and Dying. New York: Routledge, 1969

Morhaim D. The Better End, Baltimore: The Johns Hopkins University Press, 2012

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