The JAMA Network: Palliative Care Units: The Best Option for the Most Distressed

In a recent issue of the Archives, Casarett et al1 have conducted a survey of bereaved family members of patients who died in 77 Department of Veterans Affairs Hospitals.1 The authors observed increased satisfaction with care among relatives of patients who died in the palliative care unit compared with those seen by palliative care consultation teams, who were in turn perceived to have better end-of-life care compared with patients who died without palliative care involvement. This gradient effect of palliative care involvement is an important contribution to our body of knowledge.

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Why Doctors Need More Education About the End of Life

Hospital Newspaper, July 2010 Consultants Corner (print versions)

We have come to expect great acts of skill, wisdom and compassion from our medical professionals. We expect our doctors and nurses to battle against death for us, and we expect them to win over and over again, time after time. We expect them to never let us die. They don’t want us to ever die, either.

This blindly hopeful denial of death is bringing our medical system, its institutions and the quality of life we hold so high dangerously close to the edge of annihilation as the emotional, psychological and economic costs associated with treatment at the end of life are drowning us. We have to do better.

In 1969 Dr. Elizabeth Kuber-Ross wrote her seminal work, “On Death and Dying” in which she identified a generalized lack of understanding and recognition of dying and death in our hospitals. Forty years later not all of the 131 medical schools in the United States offer courses on pain and symptom management and dying, and none require their students to take those classes. Just half of US medical schools teach their students how to deliver bad news.

The practitioners who guide us to death’s door are not taught to recognize advancing death or ways to talk about it with us. Instead of empowering our doctors to prepare us for our inevitable deaths, we send them out to practice without the education and skills to support us at the most challenging time in our lives, during our inevitable deaths.

We need to be teaching our doctors that death is a process, not a single event. Their lack of understanding this makes death sneak up on us, even when it’s as big as an elephant standing in the middle of our living room. We have come to believe that we die suddenly, even after suffering long illnesses or living into very, very old age with multiple chronic diseases. We often hear loved ones say, “He always got better, and we thought he’d get better this time. We didn’t expect him to die.”

Pushing Denial

Another consequence is that medical technology and modern chemistry have pushed the limits of human life beyond our wildest dreams, also pushing our denial of death to new heights. Natural death is facing extinction. We want our doctors to do everything to keep us alive, even when doing everything takes the living out of life, demands suffering of us, and burdens loved ones with helplessly witnessing our prolonged dying.

The result: we die alone in hospitals and nursing homes, not in our homes surrounded by loved ones. We die after receiving aggressive, invasive treatments that are often futile. We die after someone—often a stunned family member—is asked to make a decision to refuse, limit or withdraw a medical treatment, usually with no advance planning or instruction from us. We die after ethics committees have weighed conflicts and navigated the route to a decision. We die too often alone, unprepared and afraid.

The financial cost of dying is now adversely effecting our quality of life, with estimates showing between 25 and 30 percent of Medicare’s more than $400 billion annual budget goes to care for patients in their final year of life because our doctors want to do everything for us-and to us—even when that means tethering us to machines, forcing us to live in institutions until our functional bodies are exhausted from complete organ failure. In 2007, 61.2% of all bankruptcies filed were due to medical debt.

Not only are doctors taught little about recognizing, predicting or discussing the dying process, they are taught even less about the spiritual component so elemental to caring for us. It is death that fires the connection to who we are and what life means to us. It is death that inspires us to be better people. When we deny death we are deprived of the transformative spiritual experience it provides the dying and those who love them.

Earlier Hospice Care

Because our doctors are not trained to recognize and acknowledge the process of dying, or to understand when to introduce palliative care, they are referring patients to the specialized care of hospice all too late, not until the very end of life, if at all. This delay deprives both the patient and loved ones of the time to adequately prepare for death—and the time to say goodbye with any sense of peace.

Denying death creates widespread misunderstanding about the holistic care offered by hospice providers when hospice care improves quality of life, can actually extend life, cares not only for a person’s physical well-being but also the emotional, spiritual, and psychological needs of the person for six months or longer—and it embraces the whole family along with the patient. We make hospice a last resort, instead of a last reward.

Lack of communication with our doctors about death is no longer justifiable. It is imperative that we talk about dying with a doctor every time a new medical crisis arrives. It is essential that they have the skill to ask us how we feel and what we think about our death, and what kind of care we want—and don’t want.

We should expect that our medical professionals are all taught sufficient skills to identify the dying process and techniques to discuss it with care and compassion. We have to insist that our healthcare system pays doctors for the time they take to talk with us about the most important decisions in our lives. If we cannot go to our doctors to talk about death, to whom can we go? Our lawyers?

We should expect that the professionals who care for us want to help us prepare for a good death. That means helping us achieve death in a place we choose, being treated with dignity and respect, having any pain managed well, being surrounded and cared for by people who love us. We all need the time to say, I love you, I’m sorry, forgive me, thank you before we leave this life.

End-of-Life Learning

What would our deaths be like if every doctor and nurse were required to pass an exam about death and the process of dying? What if hospitals had End-Of-Life Learning Centers where specifically trained medical professionals would be available to help us with advance healthcare planning while we were healthy, and at every turning point in our health? These centers could offer courses on dying and death to all the staff in the hospital and in the doctors’ offices, to private counselors, to anyone in the community who wanted to know.

What if Spiritual care personnel would be housed in this learning center to teach local pastors about end of life care so they could shepherd their flocks through it? What if the Center offered caregiver support, grief counseling, self-help groups? What if the Center trained and certified guides and doulas, midwives to the dying so no one died alone, unless they wanted to? What if palliative care and hospice providers were available for consultation and offered educational opportunities through the center?

What if this was a place where we could take away the fears of dying? What if we knew we would not die alone or in pain because our medical professionals were there for us, listening to us, knowing what dying is, giving us comfort? How would our quality of life, our quality of death and our relationship with the medical professionals who serve us change if we supported the end-of-life and made the experience positive? After all, every life is required to end. What if we wanted to make every ending a good one?

Loretta Downs, MA
Founder
Chrysalis End-of-Life Inspirations