Susan E. Mazer, Ph.D. Blog

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Hi, and welcome to my blog! I'm Susan E. Mazer -- a knowledge expert and thought leader on how the environment of care impacts the patient experience. Topics I write about include safety, satisfaction, hospital noise, nursing, care at the bedside, and much more. Subscribe below to get email notices so you won't miss any great content.

What Can We Do To Improve the Patient Experience of Dying?

September 9, 2016

autumn-pathIt has been 40 years since Do Not Resuscitate (DNR) was introduced as the first right for a patient to refuse medical care.

However, in a recent article in the New England Journal of Medicine, Jeffrey P. Burns, M.D., M.P.H., and Robert D. Truog, M.D, state that the term and its respective use and meaning are still confusing. And, it still puts clinicians in an ethically-conflicting position.

Burns and Truog rightly point out that if someone has a life-limiting disease, he or she may opt to skip the end suffering. However, families may have other needs and desires. Therein lies the challenge in the patient experience of dying.

Yet what happens when doing CPR itself puts the patient at risk of further injury and does not promise full recovery? Nurses report broken ribs, injured spleens, and more from aggressive CPR that may not be saving a life that is livable.

In a post about a replacing Do Not Resuscitate with Allow Natural Death (AND), I described why AND is different from DNR and any other ways of withholding of care. Certainly, “Allowing” feels more positive than “Do Not.” AND basically says do everything but CPR.

What Do Patients Want?

Dying naturally is what we all hope for, isn’t it? Dying in our sleep or just not having to suffer into death. In the history of medical care, death was not always looked at as welcome.

The Church saved souls, but the body died. Infection, plague, the Black Death, and childbirth were mostly terminal. Mythology, and later, liturgical frameworks prevailed in offering some kind of rationale for disease and death.

Today, the U.S. medical system still struggles with the meaning of death and dying. Some progress has been made in that physicians have the right and skills to discuss end-of-life options, and individual states have passed death-with-dignity laws.

Hospitals as Hospice

The concept of hospice was accepted very slowly, with its beginnings in England, and related to home care. Physicians struggled with turning their patients over to hospice as it conflicted with their own personal mission of saving lives.

Thus, the language, our personal concept, philosophy, and personal meaning of death came into play.

Ever since my mother died in the hospital when she was not supposed to die, I have felt that every hospital room could be a hospice room and that all patients fear dying once they become an inpatient. Creating an environment that is comforting, supports the personhood of the patient, and soothes the fears that surface in the late night hours or in-between nursing interventions is essential.

Creating an environment that allows for the most difficult moments and provides the emotional cushioning to move through whatever the outcome may be is a mandate for dealing with the path from life to death. I wrote about palliative care environments to point to the role of place and space in the dying process for patient and family.

How to Say It

Words fill the space, creating their own set of needs and expectations. I think, though, that clinicians may reconsider re-languaging what they ask patients. I agree with these comments to Burns and Truog’s article from Dr. Pramita Kuruvilla, MD:

Say both phrases out loud and experience how different they each feel. When trainees ask a patient “Do you want everything?”, there can only be one possible answer: “Yes, of course, who doesn’t?” The medical translation for this answer becomes “full code,” which may not be in line with the patient’s actual wishes. When one instead asks: “We’d like to do everything for you that we think we can reverse, but when it’s your time to go, do you want to die naturally and in peace without machines and chest compressions?”, I’ve been astounded at how most patients agree, and often quite vigorously. Many patients want doctors to provide recommendations in a compassionate but honest fashion to help guide them in these situations. Our choice of words matter.

Saying “Allow Natural Death” seems so much better than “Do Not Resuscitate.” Being in a healing environment allows us to be fully human at the end of our lives.

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