When I prepared my first draft of my Advance Care Plan, which will guide my substitute decision maker through my wishes, values and care goals, I envisioned my eventual death well into the future. With COVID-19, however, one can’t assume one’s death will happen in the distant future because it could possibly come considerably sooner.  Like now. A sobering thought.

Many people do not want to talk about death; it seems to be a taboo topic, as supported by Cortney Warren PhD, “Some of the biggest lies we tell ourselves center around death. We may avoid thinking about mortality by refusing to write a will. We may have no idea what end-of-life options our parents or loved ones want when confronted with death because no party involved wants to talk about it,” (Psychology Today).

Some people are also not fearful to talk about death.  They want to be transparent about their death and anticipated needs around it. Being transparent around their wishes at end-of-life is what gets discussed when someone goes through the process of advance care planning.  It is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. This may include discussions around end-of-life.

My own recent advance care planning discussion re-examined my plan to ascertain whether or not what I had originally envisioned still applies today.  After revising my plan, my focus transitioned to creating a one page summary of my end-of-life wishes, more like an unofficial health care directive.  Next was writing last letters, my “just in case I die” letters.

The Last Letter

A trusted mentor to me in my role as an End-of-Life Doula, Olga Nikolajev, death educator and former palliative care nurse, conveyed to me the importance of closure for the caregivers of a terminally ill or actively dying person.

Peaking my interest, the concept of writing a last letter to the end-of-life team who would be tending to my end-of-life health needs some day, compelled me to consider what to actually include.

We write last letters to family and friends, common especially when one has been diagnosed with a terminal illness. Detailed quite extensively are ideas for letters in the article, Samples of How to Write Thank You Notes After a Funeral. “Sending a thank you note after someone’s death is a traditional part of funeral etiquette,” writes intuitive energy healer Karen Frazier.

A more unusual, perhaps even rare letter is the last letter written to a physician, hospice, palliative, or home care team, written by the individual dying, not their loved ones after their death.  This last letter may become more common as more people have access to Medical Assistance in Dying (MAiD).

Reason for Writing to an End-of-Life Care Team

Doctors, health care staff, and caregivers selflessly care for others and expect nothing in return.  These compassionate care providers are trained in the skills and clinical aspects of end-of-life but as one anonymous physician’s assistant disclosed to me recently, “While our medical care skills-based training is excellent, we’ve not been prepared for the emotional care of others or our own self-care around end-of-life.” Another conversation with a paramedic who has over twenty years of experience, and also wishes to remain anonymous, revealed, “We’re trained to save lives. We triage and then hand off to the physicians and nurses in hospital. We have not intentionally seen patients through to end-of-life in a palliative care approach.” That seems to be the past as “End-of-Life Paramedic Care Programs” are being piloted in Ontario according to the article, Palliative paramedic program to train thousands in end-of-life care (CTV News, 2019).  If a physician’s assistant and a paramedic feel under-trained and not equipped to adequately deal with the emotional impact of working through end-of-life situations with patients, it is reasonable that others in health care do too.  This is a good reason to write this type of last letter.

How a medical care professional may feel around my final medical wishes, may trigger feelings of discomfort or even conflict because of their own beliefs, values, or something else entirely.  Right now, overwhelmed emotionally because of the demands COVID-19 is placing on health care providers, one can only begin to imagine their feelings of despair, especially when losing so many lives to this novel and highly contagious virus. Another persuasive reason for writing this last letter.

Perspective from Which to Write the Last Letter

Be personal and specific and share your feelings.  Marilyn A. Mendoza Ph.D. in her article, Death and the Conspiracy of Silence, gently shares, “We all have our issues around death that make us uncomfortable,” (Psychology Today).  A simple technique that is easy to follow for every chosen word, phrase, sentence, paragraph and finally overall tone of one’s letter is to use the acronym T.H.I.N.K.  Consider what you’re writing and whether it is True, Helpful, Inspiring, Necessary, and Kind. If it’s not, don’t write it. Simple, right?

What to Include

Keep it simple and on one page.  Emphasis is on one page because of the emotional overwhelm likely being experienced by the recipient at the time.  Assumption for this last letter template that follows is that it accompanies an end-of-life instructional document for a substitute decision maker, which in this scenario includes no intubation, no ventilation, no CPR, no heroics.

Address these key points, supported by example phrases adapted from Leave a message for your loved ones, in case you die early by personal growth writer Oz Chen.

1 / Salutation – “Dear Medical Team.”

2 / What death means to you – “Death doesn’t scare me because I believe a new adventure is awaiting me.  I believe my soul will return to energy and back into the universe.”

3 / What life meant to you – “In case I die unexpectedly, or before my time, I want you to know that I’ve lived a full and good life. I had the opportunity to have a fulfilling career and enjoy my hobbies, experience love at many levels and meet some incredible people.”

4 / Gratitude for the care – “Please know that I have immense gratitude for the care you have provided me because I’m sure you did your best through a difficult situation.”

5 / Empathy for the caregiver – “While I might not have chosen this exact time to die, I was glad to have lived.  Let that be of solace to you that I am very okay with the choice I have made about end-of-life care and my death.”

6 / Release from responsibility, forgiveness because they may need to feel forgiven even if you don’t think there is a need to forgive – “Please don’t despair over my death because these end-of-life instructions are my decision. If you feel the need to be forgiven for not having done more or something else, please know that I forgive you. Totally and completely.”

7 / A final thank you – “Thank you for your compassion and care because as my physical life ends or has already drawn to a close, I want you to really know that you are appreciated.”

You may feel a little nervous about writing this letter at first. Those feelings can quickly resolve as you focus on your goal.  And, most people find a way of communicating through difficult circumstances.  “Even on the deathbed, emotional growth is possible. Unfinished business can be completed, and the dying can achieve inner peace as well as peace with others,” Marilyn A. Mendoza Ph.D. (Psychology Today).

With the appearance of COVID-19 and its devastating impact on young and old, healthy or chronically ill, there is one thing about death that is in one’s realm of control.  For me, it is telling my loved ones ahead of time that I’ve truly enjoyed my life, and that I regret nothing.  It is also in my control to tell the health and medical team that cared for me and did their best, the gratitude I have to them for their care.

This unprecedented time prompts us to talk about death, to talk about our own deaths.   “Death and dying aren’t easy, but we could do much better as a society at dealing with both. We need to stop making death such an isolating experience. We need to talk about it more freely,” Marissa Moss (Psychology Today).