To be or not to be - Staying present for the hard conversations

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.

Erica Morales memorial page via facebook

Erica Morales memorial page via facebook

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.


This post was written as part of the Nurse Blog Carnival. More posts on this topic can be found at This Nurse Wonders. Find out how to participate.

Nurse Blog Carnival

How my first death left me perplexed and humbled.

Bryan Adams sang about the summer of ’69 and I’m going to share a bit of my summer of ’89.  I was a CAP, as we were affectionately referred to –members of the Clinical Assistant Program at Memorial Sloan-Kettering Cancer Center. A CAP was a paid nursing student approaching his or her fourth and final year of a nursing program.  Each CAP was partnered up with a preceptor/buddy for three months.  We were all shaking in our boots at orientation but they welcomed us with open arms and gave us the resources to feel confident. 

 

I was twenty years old and continually out of my comfort zone, witnessing so much suffering of patients with neurological cancers such as brain tumors and spinal cord tumors.  I was supported by enthusiastic nurses that embraced teaching and exposed me to new experiences.  That included post-mortem care. 

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I can’t recall the patient’s name but I remember the experience vividly.  She was a college student - just like me at the time – when she had a spontaneous cerebral bleed as a result of her leukemia.  The bleed in her head caused her brain to herniate.  Herniation occurs as a result of brain swelling.  The cranium or skull prevents the swelling brain from expanding and as a result, vital brain tissue is deprived of oxygen, often resulting in death.

 

My heart was racing, my face was flushed as my preceptor and I attended to her in the D bed of the NICU.  She oozed blood from her eyes, nose, ears, and sides of her lips, her vagina, her rectum, and any hole we created with needles or tubes.  At the time, I didn’t understand this was a result of DIC (disseminated intravascular coagulopathy) in which the body can’t regulate its clotting ability.  I assumed each body oozed this way when it dies, until my next patient that died did not ooze. What I did comprehend was that her heart was not pumping, her lungs were not breathing and I was zipping her into a body bag. This young woman was leaving this world and devastating her family.  It was painful to bear witness to and yet I recognized what a privilege this career I was embarking on provided me. 

 

It’s been twenty-five years since that death.  I’ve seen many others die; for some, death brought relief after a long illness.  For others, death came too early, moments after birth.  Sometimes poor choices played a role such as the teens that crashed the jeep when drinking and driving, and there’s also the inconceivable death of witnessing a mother dying in childbirth.


Death doesn’t often give us a lot of options and as nurses we don’t always have the answers. I do know that if we can bring our whole being to the experience, be open to what presents itself and be the calm person in the room, we have given a remarkable gift to the patient and their loved ones.

News Flash: You're going to die - Get Ready.

Chances are that if you are reading this post, you’ve had your fair share of exposure to death.  You may have participated in comfort care of a patient in the active phase of dying.  Perhaps you played an integral part in the decision making of a patient’s DNR (do not resuscitate) status.  You may have held a hand, hugged a family member, or turned off a respirator upon the last breath of a patient.  You may have even had your own serious illness.

As nurses, we find ourselves having uncomfortable conversations all of the time.  It can be with patients directly, or with family members.  It may pertain to risk factors of a patient’s clinical situation, or a treatment that fails to battle the disease adequately.  Sometimes we initiate a challenging chat and at other times it happens in the least opportune moment when a patient says: “I’m afraid”.  Our courage allows us to engage in difficult conversations, helping patients or family members ease more comfortably into accepting the natural stages of dyingNo morphine drip has ever held that amount of power and influence.

 

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So, for all of you brave ones out there who have had these tough conversations with essential strangers….how many of you have your own affairs in order? 

Yes, I’m talking to you!  

I have a hunch that you, like me, have had that “write a will” task on your list of things to do for long while. 

 

 

That changed this week for me when I met with a lawyer and completed my trust.  I assigned a trustee and a backup trustee with some simple instructions on how to split up my cash.  By putting your affairs in order, you make the decisions on how your money is divided up.  If you don’t, it is left to the state to make those decisions while your family, or friends, lose a bit of cash and time in the process.  Don’t you want your family to focus on mourning what an amazing person you were rather than complaining about you being a procrastinator?  It’s great to have these conversations with your family, but it doesn't count if it is not written down.

 

By no means am I capable of offering legal advice.  I suggest looking into your state requirements and evaluate the most efficient means of getting a trust or will set up.  There are plenty of cheap versions online, but if you want to be guided thoroughly through the process, you can get assistance from a lawyer.  Give yourself a practical timeline of a month or two to complete this task.  A good motivation is to call one friend and ask them if they have their estate planning taken care of.  And then have this friend hold you accountable on completing the task.  You can even use the blog for support and comment when you get it done.

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I’ll give you some time to digest this all, but you know down the line, we will be having that friendly advanced directive conversation.  Now, go out into the world and smell the roses while you are lucky enough to do so!