The Privilege of Dying

As I discussed in my blog post last week, the discussion of end-of-life care and the difficulty we all have in letting go of our friends and loved ones is the topic that resonated more than any other with the readers of this blog. With that in mind, I asked my colleague Marlene Goodwin-Esola to continue the conversation and offer her unique perspective as a nurse caring for dying patients.
--John

Marlene Goodwin-Esola
Academic Chief Nursing Officer 

I am honored to share my heartfelt thoughts on the tremendous effect that a nurse can have when faced with a dying patient.  Nurses are privileged to care for patients as they enter the world as a newborn, and as they leave this life in the dying process.  A tenet of the nursing curriculum and a noteworthy attribute to the profession is the act of “caring”—the practice of looking after those who need assistance caring for themselves.   A 2015 Gallop poll continues to reveal that nursing is the most trusted profession, followed in the top five are other crucial members of the health care team: doctors, pharmacists, and clergy.   Without skilled and compassionate nurses, the trust felt by the patient during the end of life journey would risk being devoid of the caring approach to a phenomenal aspect of living—the process of dying.  Nurses have been, and will continue to be, critical to end-of-life care.  We are at the bedside of the hospitalized patient 24/7.  One of the key roles that a nurse plays is in facilitating the conversation when a patient and their loved ones has questions about the dying process 

Unfortunately, not all of us are comfortable initiating a candid conversation about options for the patient with a terminal disease.  The newer nurse may not have experienced a dying patient and feel anxious in handling the exchange.   We have the “do you have an advanced directive?” conversation when the patient enters the system, but sometimes the conversation stops there, and there are questions left unanswered, and anxieties begin where they can be avoided.   If the patient is facing a terminal illness, we have to be brave enough to have discussions about end of life options and if we cannot for whatever reason, it is imperative that we find someone on the health care team who can help us.   In addition to the physician’s support, we are fortunate to have two additional resources at JMC that the nursing team can call to help us develop the plan of care for the dying patient.   We have a full time hospital Chaplain who is available for us when a patient and their family needs spiritual guidance, and we have an additional role that has already made an effect in the timeliness of end of life options: our Clinical Resource Nurse Educator or “pre-Rapid Response RN.”  This nurse has over 25 years of critical care and end-of-life experience and she is available for us to meet with families should they have questions about this time in their lives.

On a personal note, when I was two years out of nursing school (in the 1980’s), my 28 year-old friend was diagnosed with leukemia.   This was the pre-bone marrow transplant era, so she was faced with a poor prognosis.   Her will to face her death with dignity taught me an immeasurable lesson: she took control of her last days by planning her funeral and asking me to be a pall bearer.   I was tremendously humbled and in awe of this, and vowed to always allow the patient an atmosphere of trust in their thoughts and fears about their death, and to honor their wishes as best I could.   Avoiding the discussion about dying wishes creates an atmosphere of fear and dying “alone” by not allowing the sharing of their wishes.  When a patient tells us “I am ready”, we need to stop what we are doing and make this wish a priority.    We—the nursing profession—need to always partner with other members of the heath care team to manage the priorities at the end of life to include the positioning, hydration, nutrition, pain and comfort measures, providing support to the patient’s loved ones, and most importantly, allowing the patient to die with dignity.  We—nursing leaders—need to provide the newer generation of nurses the education they need to become comfortable caring for the dying patient, or seeking help from other experts.  We need to continue the core of who we are as a profession as we are privileged to be a part of someone’s last days—to provide care, comfort, support, and lastly, our presence during this sacred time.  

Letting Go

I must admit, I was surprised and pleased at the attention given to my recent blog post, The High Price of Dying. It was - by far - my most viewed and popular entry to date. It made me realize that the topic of accepting death and letting go of those we love is on the minds of many of my friends, colleagues and readers.

It also got me to thinking, “why can’t we let go” or “why can’t we let go more easily?”  This question led me back to my office bookshelf, and to the pages of Atul Gawande’s Being Mortal: Medicine and What Matters in the End.

In what I found to be an incredibly insightful book, Gawande examines the ways in which the medical establishment in the United States, when caring for the elderly and terminally patients, expends the greatest amount of energy trying to keep patients alive and “safe.” He posits how the focus can begin to shift to make the time left as meaningful and fulfilling as possible.

This book really resonated with me and I agree with Gawande. We tend, both as humans and as medical professionals, to disassociate thinking of those last weeks, days and months as part of the patient’s entire life. We focus on simply getting through those moments instead of honoring the spirit and ways in which they have lived their life up until that point. We need to recalibrate our professional and personal lens in order to provide the most meaningful assistance possible in the final days of life.

As Gawande explains, “A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”

But what does this mean, practically? Not only do patients need to have their legal and medical ducks in a row, but patients, physician and families need to have hard end-of-life conversations before it is too late. I have even heard of some doctors making this conversation a component of a patient’s annual exam. In addition, we need to reexamine not only what end-of-life care looks like but how and the environment in which it is provided.

I have reflected lately about the totality of my own father’s life and how the choice we made for him in those last days served to honor the way he lived. I think every patient deserves that.