Honoring Life’s End: A Conversation With Vanderbilt Hospital Physicians

“ I have been a registered nurse since 1980.? I have worked in every ICU type there is, in trauma and ultimately in the emergency department. ??I am now a mediator and conflict manager and I have the privilege of working with individuals and families, helping them to have health care and end of life conversations, so they can write the ending that reflects their wishes, beliefs and values.? I also have the privilege of working in conflict management with healthcare providers and healthcare systems, resolving conflict and learning how to have challenging conversations with each other and with patients.

?So first, thank you.? Conflict has risen, expectations have risen, there was COVID….so many things make your work even more challenging.? Thank you for all you do and thank you for caring enough to be here for this conversation.

?A client told me once that his ending is how he will be remembered.? And he was right.?? So many times, I’ve worked with clients whose last memory of a loved one, and sometimes biggest regret, is how their family member died – and it’s ALWAYS about what they put them through and the suffering they witnessed.? It is haunting.? I have never, ever seen that type of regret when discussions have been had and decisions made based on individuals values and wishes.

?We don’t talk about death enough. Which is interesting in a lot of ways – the most obvious being that it WILL happen.? In a 2016 study, The Conversation Project found that while 90% of people say that talking with their loved ones about end-of-life care is important, only?27%?have actually had those conversations.

??As healthcare works, we have to see death as the sister to birth.? Because there are worse things than dying –like living tortured to put off the inevitable death.? Death is not a failure of the medical system.? We are supposed to die.?? We are at an age where we all reap the benefits of improved healthcare and medicine.? We get to live longer and often times live better.? But there’s a price for that.? It’s taking longer and it’s harder to die.? We can improve how we deliver medical care and how patients experience medical care by normalizing end of life conversations.? Imagine the shift in expectations.

?When I was 16 years old, learning to be a nursing assistant in a nursing home, ??my trainer told me something I. never forgot: ?that every patient I saw was somebody’s mother, or father, or child or sister or brother.? ??We have to remember that are clients are not “the pancreatitis in room 2014” or “the diabetic in room 306”, but the human being who has the illness but who is so much more than that.?

There are 6 things that matter most for human beings in illness and in aging and especially as their life is ending:

??????? Quality of Life: Including pain relief, comfort, activity, symptom management

??????? Independence and Autonomy: Decision making, choices, personal care

??????? Meaningful Relationships

??????? Purpose/productivity

??????? Dignity: Maintaining dignity and receiving respectful care that acknowledges individuality and uniqueness

??????? Spiritual and Emotional Well-Being

?Notice the priorities do not include living forever or living as long as humanly possible .

?If the medical system lets people know that death is ultimately inevitable and it’s ok to have quality of life as a goal, people will believe that.? If we tell them we can fix anything if they just let us try, they’ll believe that too.

?So, if the second biggest fear that caregivers have for not having these conversations is that they’re awkward and difficult, let’s just acknowledge-? These conversations are not easy to have.? There is pain – physical and emotional - ?and loss and grief with aging, with illness, especially as both progresses.? That’s not bad.? It’s normal.? It’s the price for being alive.? Personally, I think there’s a flaw in that system, that our endings should be easier and grander, but it is what it is.? Or maybe the flaw is by us, making our endings something we think we should avoid – including the pain and loss and grief.? What if we could just sit with it, accept it,? recognize that life is a series of birth, death, and resurrection over and over again.? By shining a light on the things we keep in the dark, the power they hold diminishes and dissipates and I find this true when people have the difficult conversations around end of life decisions.? They have a choice and they have peace

?I think of our lives as our stories.? We’re all writing our unique, individual stories.? And as healthcare providers, you play a leading role in that story.? We can’t lose site of the fact though that in stories, endings matter.”

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