On the morning of October 18th, I was listening to the CBC radio’s interview with Dr Bigham regarding his new book “Death Interrupted, How Modern Medicine is Complicating the Way We Die” and afterwards I ordered the book from Amazon and spent a few weeks digesting its contents.
Surprisingly, nowhere in his book does he mention the role of death doulas, despite practicing in countries where death doulas complement the palliative care team, the MAID team, and work directly with both the terminally ill and healthy individuals who wish to get their affairs in order.
Throughout the book, the doctor explores the death dilemma from both sides (the medical personnel as well as the family/patient). Death is “the greatest mystery in science” according to Elizabeth Kubler-Ross, the Swiss American pioneer in the study of death and dying. Or, if you believe in the stories you read by the author J. R. R Tolkien, you might view approaching death as a compassionate offering from God.
Dr. Bigham suggests four steps once you have read the book. Step 1 is to “Think about death” (page 283), Step 2 is to “Talk about death” (page 284), Step 3 is to “Write about death” (page 284), and Step 4 is to “Live your life” (page 284).
The remainder of this blog will focus on Step 3 “Write about death”. I couldn’t agree more (personally and professionally) with Dr. Bigham’s stance on how much easier it would be for everyone if the patient’s wishes were known ahead of time, so that they could be followed to the letter in the case of an emergency room visit or ICU stay. This would relieve so much stress as there are limitations of medical science and realities at the end of life.
When you can’t speak for yourself, there is a legislated hierarchy of who can speak for you. In Nova Scotia, on the Substitute Decision Maker Identification form there is a ranking system, but you can provide an explanation for why the higher-ranking person according to the legislated hierarchy is unable / unwilling to act as the decision maker for the proposed health care, placement, or treatment. The list begins with spouse, child (over the age of 16), parent and ends with public trustee (who is always the last resort). Their job is to make decisions for you. These decisions concern the quantity of life versus the quality of life. This means that it is important for you to make your wishes known to your family and friends before they need to be known. Death’s timing is uncertain.
As a death doula, we can assist our clients to put their clear wishes on paper (but not offer legal advice which is not within our scope of practice) to guide your care. We can explore fully the options available to our clients. We can explore what are their values and goals and specific treatments that are acceptable and those that are not. We can facilitate conversations so clients can choose in advance the best possible designate to carry out their wishes in terms of an emergency. We can also mediate conversations with families so that there is no family infighting when the client can no longer speak for themselves. This enables the forming of an alliance to honour the person’s life and facilitates a loving end to this life.
We also suggest that these legal documents be reviewed annually as circumstances change. In Nova Scotia, this paperwork is referred to as the Personal Directives Act. There is also separate paperwork if applicable, for a Do Not Resuscitate (DNR) situation. Having advance directives that lay out the limits of care makes everyone’s job easier and less distressing. We can also assist in the non-legal aspects of preparing a will and the various power of attorney documents which are just as important to have filled out prior to someone’s death.
Also here in Nova Scotia, we have an organ donation program, something which is automatic unless people opt out of it legally, and details are indicated on their driver’s licence. Dr Bigham explores this topic in his book and sums up his feelings towards it with this statement “Consider registering as an organ donor; let something good come of tragedy.” (Page 284). In the book he interviews Pam Nicholson, an organ donation nurse in Ontario with over ten years of experience, who quotes “Don’t take your organs to heaven. Heaven knows we need them here.” (Page 216). If organ donation doesn’t appeal to you but you still wish “to give back from beyond the grave”, you might wish to consider donating your body to medical research or to forensic scientists who study how bodies decompose (and thus use this knowledge of body decay in the pursuit of criminal justice (e.g., murder cases). It becomes a win-win by bringing meaning and purpose to a death.
Death Doulas are well versed in the death dilemma and the death positive movement and are a great resource at all stages of life, dying and death. If employed by a client, we act as their advocate and promote a dignified death. We all wish for the same thing for our clients (and ourselves) namely, to have a life well-lived and a death well-planned.
In conclusion I leave you with the sentence that Dr. Bigham uses at the end of his book. “…I’ll wish you a good death; not a moment too soon or a moment too late.” (Page 285).
Links to Resources
www.novascotia.ca/just/pda/_docs/PersonalDirective_Booklet.pdf PersonalDirective_Booklet.pdf (novascotia.ca)
https://novascotia.ca/DNR form (novascotia.ca)
https://novascotia.ca/ Substitute Decision Maker Identification
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