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DYING IS PART OF LIVING

Valerie Cappello, MSW, LCSW
Newark Beth Israel Medical Center, Newark, NJ

Margaret James, RN
University of Texas Medical Branch, Galveston, TX


After tending to our lives, we now have some time to reflect on our roles as a social worker and nurse with communication, collaboration, palliative care and transplantation. Interestingly enough this has been a topic of discussion amongst many transplant social workers and nurses for some time. Most recently, it has been part of multiple discussion threads on the Society for Transplant Social Workers website, although focused mostly on heart transplantation and the LVAD population. It appears as though an increasing number of programs are including palliative care in their treatment plan and as part of patient education.

Dr Valentine has had these very discussions with us in the past, always coming to an agreement that discussing death is an honest and necessary part of the transplant evaluation. We believe death is a part of life as we are all touched by more than our own mortality. Death is inevitable whether transplantation is involved or not. Transplant, like any treatment option, is an avenue to be considered. Many misconstrue it as a guarantee of survival when in reality it is not a guarantee at all. We firmly believe that patients should be presented with all options. Patients should actively pursue transplantation as well as no action, and what each choice may bring. While choosing no action may be seen as cowardly by some, for others it is a brave choice to allow the inevitable to occur. However, the same about transplant must be considered. Transplant is a brave move on all parts as no two patient experiences are the same. There are no promises of wonderful outcomes.

We do our patients a disservice when we neglect to talk about death for those dying or at least preparing for death. Yes, it is true that some have not come to the realization that death is near but for many, opening the door to discussion with their family is a gift. Who hasn't experienced the patient/family dynamic where, when presented with transplantation, all but the patient is stunned? Giving permission to discuss death and final wishes can be a relief for many and loathsome for others; however, it remains part of transplant education if only in discussing advance directives.

Many of our patients are thrust into what Erickson called our final stage of development "Integrity versus Despair" due to their advanced illness. They are ill-prepared for what their life's living adds up to. Rarely can any person (let alone patient) stop and say "life has been good and I am ready come what may". The discussion of death in many societies is considered taboo whether brought up by the ill (who often define it as giving up), or their supports (who may lack faith or wish for an expedited outcome). Perhaps if we looked at the discussion of death as a way of freeing one to gain strength from experiences, share in life's moments and give permission for one to move forward in that area of discovery, we might be making dying a little easier on all who are involved.

How best do we incorporate the discussion of death without losing the patient's confidence in our skills and abilities as care providers? We try to explain that there are no guarantees with transplantation; no one walks off into the sunset or along a path of rainbows and roses. Yet we all try to present the positive outcomes, quoting survival statistics, our center versus the national average, perhaps forgetting to mention the most recent patient's death, whether shocking or expected. Sure we touch on the negative aspects of transplantation, but who really ends the discussion on a negative note? Rather we prefer to instill hope—for many, we are the LAST hope. We in the transplant community know that the surgery in itself is not a giver of everlasting life. Many consider transplant a lifesaving treatment and, although true, death still remains in the future. The question is, how much time and what kind of time are we talking about?

Within the transplant community we recognize that transplant is a major endeavor that requires full commitment by patients and their supports, but our patients and those unfamiliar with transplant often have a misconception of what transplant entails and provides. For us, transplant is like a game of nickel slots: all lines have to be in perfect alignment to obtain the goal of the ultimate win. One has to be sick enough to require a transplant, yet healthy enough to receive and recover. Finances and supportive coverage must be there, and let us not forget about the donor. The wait to match must be in one's favor. As practitioners, we know that death can come at every turn in the process; however, do our patients really grasp this concept? We have all seen it time and again—the patient referred for transplant that is too sick, the timing is too late, or the patient who lacks supports or finances to accommodate the post transplant recovery needs.

The patient who is refused transplant and responds with "How could you just let me die?" is only trumped by the patient who was given the second chance at life, but did not live as long as we had hoped. Given the opportunity to reflect on their life's goals and achievements through journeying with a palliative care focus might have made reaching the end easier, more bearable for the patient and those around them including ourselves, the team.

When we educate patients and their supports on the option of transplant, we have always tried to incorporate talk of life, death and restructuring of roles and dreams. As a social worker, I am fortunate to be able to incorporate the Five Wishes as part of my pre-transplant education. The Five Wishes is an advanced directives tool written in a simple easy to follow format providing patients with the option of selecting a health care power of attorney and completing a living will that allows them to choose the kind of medical treatment they want or do not want in certain terminal situations. In addition to medically focused advance directives the Five Wishes has the additional bonus of including three sections that focus on the patient's wishes- how they wish to be made comfortable, how they want to be treated and what they wish their loved ones to know.

Reviewing the Five Wishes with a patient naturally leads into the discussion of palliative care while gauging all party's readiness before beginning the death and dying discussion, and if needs indicate hospice. It is only in recent years that hospice agencies have increasingly recognized the tentative nature of transplant. It is a very fortunate transplant program that is linked with a hospice that will accept a patient that is either in workup or listed and agree to follow them for hospice care. As transplant awareness and understanding grows in the community at large we may see an increase in supportive care for those pursuing transplant, but at this time transplant continues to be seen as an aggressive form of treatment regardless of outcomes, and as such negates one's ability to elect for hospice in most situations. While the Five Wishes does not replace hospice, it does assist the patient in expressing to their caregivers their needs, preferences and feelings.

In summary, the practitioner who refuses to discuss death is one who questions their own existence or has not come to terms with their own mortality. Preparation is key, not only for oneself, but also for the ones who are left behind. Discomfort in a topic is not an appropriate reason to dismiss an area of need. If this may be the case, then please make the move and incorporate the Palliative Care team in the treatment/referral plan. This is your patient's life and they deserve to prepare for death as well as the wonderful possibilities that transplant can offer.

Disclosure Statement: The authors have no conflicts of interest to disclose.