Contribution by Carey S. Clark, PhD, RN, AHN-BC
I recently supported a dear friend of many years who was faced with caring for her terminally ill husband. We were part of a small group of fast friends, having all gone to the same college, and we spent many years afterwards celebrating life and adventuring together. In many ways, this special couple had been family to me over the years.
One challenge for me as a nurse was being 3000 miles away and relying on text and cell phone calls to assess my friend’s status and prognosis. While I was fairly certain that once he was put on the ventilator, given his complex medical situation,he had numerous ailments that were too complex to be treated at home one of which was leaky gut. Not even a nurse coming to the home would have been able to give him the care he required. He would not be successfully extubated and go on to be discharged, the medical staff were not clearly communicating this to my friend who was trying, despite her grief and stress, to make the right decisions for her husband.
The conversations I had with my friend ran deep, and the main challenge was supporting her in getting the prognosis clearly from the various providers; my biggest questions for her to answer to help support my assessment were why is he still on the ventilator, what is the prognosis, and what did he want medically at the end of life? It turns out he wanted all medical-technical interventions possible if there was hope for his recovery and some quality of life; but what was not being conveyed clearly here was the hope of recovery issue.
After several days of the husband being on the ventilator, my friend was able to listen to the renal team discussing her husband’s care, and it became clear to her that he was not being “cured” or healed, rather they were prolonging his inevitable death. The hospitalist was in a little bit of opposition to the renal team, with the hospitalist wanting to continue care, play wait and see for a little while longer. My friend recently reflected that the hospitalist was okay with simply keeping her husband alive, with no apparent concern for his quality of life. Finally, when my friend’s husband became septic a few days after intubation, when the full team finally confirmed that the prognosis was extremely poor, she was able to make the decision to remove the life support. He passed away peacefully shortly thereafter.
Unfortunately, this scenario of futile care and over-use of technology at end of life is repeated over and over again, on a daily basis, in nearly every hospital in America. While we know that technology use can save lives, we also know of the pain and suffering it can cause. For instance, Johns Hopkins recently reported that fully 30% of people intubated in the ICU setting suffer from PTSD post extubation. When people state that they want everything done for them if there is still hope, we need to consider that folks may really not know what they are consenting to, the suffering that technology in futile care cases can create, or the improbability of recovery after undergoing a full code scenario in the hospital. Their knowledge and experience with end of life technologies is often limited to what they see on TV or in the movies, the heroic efforts, the beautiful deaths, the rapidly unfolding peaceful or positive conclusions that bare little resemblance to the reality of end of life care.
As healthcare providers, nurses and doctors do know. Most doctors clearly do not want aggressive technologies used for themselves, and yet they need more training on clearly communicating when care is overly-aggressive or clearly futile; the following article clearly summarizes the research with doctor’s preferences around technology at end of life and the sort of training both doctors and nurses need to do to support better end of life care. http://www.healthline.com/health-news/end-of-life-treatments-doctors-patients-differ-060314#3
As Dr. Angelo Volandes in his Boston Globe Opinion article stated, we need a complete overhaul of end of life care in this country. “I have heard patients and families demand that we “do everything,” to prolong their life, but in many cases they, unfortunately, have little idea what “everything” means because no one has explained their options clearly. Sometimes, patients and families don’t want to face death. But more often, the problem lies with the medical profession. The principal reason we have gotten death so wrong is because doctors fail to have meaningful discussions with patients and their families about how to live life’s final chapter.” (Read the full article here: http://www.bostonglobe.com/opinion/2015/01/11/prescribing-end-life-conversation/GfhqbsYR8KjaD3ePWlK6JI/story.html).
Unfortunately, it remains true today that approximately 60% of the population in America will die in the hospital, even as we know 80% of folks would prefer to die at home. Meanwhile, the media generally continues to portray death inaccurately. In our culture the general public has little to no opportunity or incentive to educate themselves around death, and yet it is where we are all headed. Although it may be “easy” or “correct” for nurses to go along with doctor’s orders and provide futile care day after day, at what point do we decide to do our care differently, to step fully into our role as the patient advocate? Although we can’t divulge specific prognosis, we can discuss the limitations of technology. We can sit with families and discuss the reality of the care provided, and we can encourage them to have those conversations with the doctors: “What is the plan of care, what is the likely outcome, is the technology use just prolonging life without hope of recovery, is the technology use painful or likely to cause PTSD, what will life be like if my loved one does survive, are they suffering from the use of this technology, and what about quality of life now and into the future?”.
Why can’t we just include a list like this as a guide for doctors and nurses in facilitating their communication process, to really strive for educating families, patients, and decision makers around end of life care and futility? Why do we assume that folks really know what it means to “do everything”? We can become more comfortable with the types of conversations families need to have as they approach end of life, particularly if we spend the time to be reflective about our own future death experience and the deaths we have witnessed both professionally and personally. We can think about how different death seems when it is our loved ones facing this transition, and how we perhaps at times distance ourselves from the death of our patients. We can consider how in the last 100-150 years death in America has been removed from the public view, from the home and places of comfort, from the natural progression of life, and consider how death has become institutionalized in our hospitals. We can consider the healthcare costs around end of life care and how that impacts available resources and compounds the amount of money we continue to spend on healthcare. We can think about the nurse’s role around supporting healing at end of life, and what we want that to look like for our profession and those we serve. We can look more closely at our own end of life fears and concerns that make it challenging to care for those hospitalized at end of life.
I am currently teaching a thanatology (study of death and dying) course for nurses that I designed in way to support students to go deeply in their reflective process around death and dying, to explore the holistic needs of the dying, and to delve into the body of evidence around the science and politics of death and dying. While the course is challenging for students on many levels, it is also transforming their nursing practice, touching them deeply on a personal level, and helping them to advocate for others at end of life. I remain hopeful that someday every healthcare provider from MD to RN to Social Worker will have the opportunity to take a thanatology course like this and that out culture will eventually strive to start death education at earlier stages in life, moving toward acceptance that this life is impermanent, and that it is perfectly okay, natural, and normal to die; that one can indeed refuse treatments and technology regardless of age; that living well leads to a positive death experience. There is a new movie available that aligns with this purpose, called Death Makes Life Possible. I highly suggest using this movie as a tool to support discussions around end of life and open up to the possibilities of “transforming fear into inspiration”: http://deathmakeslifepossible.com