If you ask people how they want to live out the last few days, weeks, or months of their life, it is unlikely they would say, hook me up to some dopamine, drop a tube down my throat and if my kidneys fail, give me some of that dialysis.
Yet because we live in a society that fears death, we rarely entertain end of life decisions until confronted with them. Often that comes with an emergent hospital admission and when push comes to shove, without a prior conversation, fear naturally prompts us to choose life, regardless of the consequences.
One of the privileges of working as a nurse is the front row-seat it provides me to intimately witness the sacredness of life and death. As a critical care oncology nurse and a Zen hospice volunteer, I’ve had the opportunity to be with people at the end of life. Post about my first death of a patient I’ve helped families make decisions to end life support, held many hands, hugged survivors left behind, and also sat as silent support for others. I’ve tied string under the chin and the top of the head to close mouths of dead bodies before rigor mortis arrived, turned off respirators, and I have placed bodies in bags, and zipped the white nylon sack closed in a permanent fashion before transporting to the morgue.
While working as a nurse, (primarily in critical care, oncology and obstetrics), end of life situations have been some of the most uncomfortable yet rewarding moments for me to experience. When we as nurses are able to be vulnerable and connect with a patient who says: “I’m scared I’m dying”; and if we have the courage not to turn away, even though it is so incredibly hard, we can provide a rare opportunity for healing. When a family member anxiously asks what you would do if you were in their shoes? Don’t turn away, busying yourself with a familiar task to avoid feeling the emotion. As we know physicians are rarely at the bedside. Nurses have an enormous opportunity to open a dialogue about what is often unsaid.
These days, I don’t find myself having the same end of life conversations that I had when I worked in Oncology, ICU or Hospice. They are different, yet still painful and difficult. I work in Obstetrics, an area of new beginnings not endings. When death happens here, it is unexpected, unwelcome and inconsolable. With so much hype around wanting the perfect birth, some couples even write out a birth plan for their dream birth. It is never on anyone’s radar that the baby may not survive - and certainly they don’t expect the mom to die in childbirth. It is rare but these deaths do happen. Certainly when Carlos Morales brought his wife Erica to a hospital in Arizona this January to birth quadruplets, I’m sure he didn’t anticipate going home without her, yet that’s what happened. The cause of her death has yet to be released but we do know she developed hypertension, which compounded with carrying quadruplets, created considered risk for hemorrhage.
Like many nurses, I have aging parents. They are entering their eighth decade with a number of comorbidities. My mom has witnessed the passing of all five of her siblings. I’m sure she has some concerns about the dying process but this year she openly shared with my family that she would like no interventions to prolong her life when the time comes. She lives in the reality that life in a body is impermanent. She is not actively dying, she has no terminal diagnosis, she is simply aware that she is aging and death is inevitable. My father on the other hand, despite a significant medical history and a complicated four-month hospitalization is not as comfortable with dying and definitely doesn’t want to talk about it. Earlier this year, my dad was septic and nearly died. The mere mention of a rehab center can trigger PTSD for him. Actually, it can trigger PTSD for the whole family. Rehab did not bring out his best qualities and he had little will to live. When asked if he wanted to be resuscitated, to the dismay of my brother and me, my father who was mentally sound at the time, clearly said, “yes I would like CPR and a respirator”. Despite our many life experiences, sometimes fear and uncertainty are too strong for us to consider alternatives. In the meantime we can offer support and keep an open dialogue.
Death doesn’t just show up when we get a diagnosis of a terminal illness. Sometimes we are caught by surprise by the MI, CVA, or trauma. The conversation needs to happen prior to being sedated in the ICU. Have those conversations with your patients prior to the ICU admission. Have those conversations with your friends, your colleagues, your family members and your patients, even if you think they are healthy. When I admit a patient, I need to ask whether they have a health care proxy or not. Post about my last will and testament It is a rare obstetric patient that has one, but when they inquire about it, I open it up for a conversation. Inevitably they say we really need to do a will too with the baby coming into our life. While you are filling out that paperwork, have a chat with your parents about what their wishes are for end of life care. Chances are, it will be a new conversation.