Understanding Your Choice at End of Life
An informed patient is an empowered patient. It is more important than ever to be proactive and assertive and plan in all possible ways for the way you want your story to end.
Due to a chronic lack of funding, the healthcare system is overburdened, and as a result, our choice has largely been taken away. There are not enough hospices and palliative care units. For those who want to die at home, there simply is not enough staff and not enough resources.
I have been at the bedsides of hundreds of adults as they have died. Some were peaceful, natural deaths – the kind we all hope for. But that is not the way most people die.
I have seen people die suddenly, unexpectedly, before my eyes or in my arms, and I have seen others in tremendous pain for days, weeks, months or years before they finally die. I have seen people who were elderly and frail put on ventilators, and their dying only took place when the tubes were removed – many without loved ones at their side.
That is not planning, and it is not choice. Let’s change that for you and your loved ones.
In Canada, you have the right to:
Die naturally;
Suicide (was decriminalized in 1972);
Withholding or Withdrawal of Treatment: the choice to cease life-sustaining or maintaining treatments such as kidney dialysis and chemotherapy. Includes “Do Not Resuscitate Orders” (No CPR form in BC);
Voluntary Stopping Eating and Drinking (VSED): Competent individuals are legally permitted to refuse oral and artificial nutrition and hydration in all provinces and territories across Canada
Voluntary Stopping Personal Care (VSPeC): Includes declining artificial nutrition and hydration, refusing to spoon-feed or decline regular changing of position in bed, which would likely lead to infection. Both VSED and VSPeC are seen as an alternative to MAiD or a path to MAiD
Palliative Sedation refers to the intentional use of pharmacological agents to induce sleep for relief of distressing symptoms, usually used in the last hours or days of a terminally ill patient.
Medical Assistance in Dying (MAiD) MAID is a planned death, most often by a medical practitioner or nurse practitioner administering substances to an adult, at their request, that causes their death.
When to think about your choices for end-of-life
While crystal balls don’t exist – and we might not use them even if we did – being informed now regarding your future care can reduce stress, increase communication, and lay the groundwork for future decisions.
Don’t wait for serious illness, frailty, or cognitive decline. Right now, think about your values and beliefs and preferences for future health care. Then have conversations and write letters and with your loved ones about the treatment and care you would want to receive at the end of your life. If your preferences are well thought out and you have had a conversation with your clinicians, consider writing a legal Advance Directive.
When your health begins to take a turn and body parts start breaking down, or as you get older and frailer, start having frank, ongoing discussions with your doctor and clinicians about risks versus benefits of treatments… and your values and beliefs. Be assertive about what you do and don’t want.
If you have a serious, life-threatening or life-ending diagnosis (especially dementia) begin your conversations about choice at end-of-life. Where would you want to die (home or hospice) and how can the appropriate services be put in place? Plan ahead.
If you want Medical Assistance in Dying (MAiD), reach out to your local MAiD Coordinators early (see the next chapter). With MAiD, people are taking choice back. They are choosing to die with loved ones at their sides, often with celebrations and remembrances, in their own beds, in their own homes or locations of their choice.
A Deeper Look at Choice at End of Life
Withholding or Withdrawal of life-sustaining treatments
As a patient, you have the right to make your own health care decisions – even to refuse treatment that could keep you alive – as long as you meet the following criteria:
You are an adult or, in some provinces and territories, a mature minor.
You are capable.
No one is pressuring you to decide one way or another.
Withholding life-sustaining treatment includes not starting treatments that could keep you alive.
These decisions can be made for a future time if you are not capable of making your own decisions in an Advance Directive (legally enforceable) or a Letter of Medical Wishes or Living Will (guidance for your substitute decision makers and healthcare teams that are not legally binding). See Chapter 7.7.1, Understanding the differences between Advance Directives, Living Wills & Letter of Wishes.
The most common examples of withholding treatments would be choosing:
Not to have cancer surgery, systemic treatment (chemotherapy or immunotherapy) or radiation
Not to start kidney dialysis
Refusing tube feeding
Not to be resuscitated with cardiopulmonary resuscitation (CPR).
Withdrawing life-sustaining treatments includes drugs, equipment (such as kidney dialysis or ventilator), fluids or nutrition via an intravenous (IV) or tube feeding (artificial nutrition).
In 1993, the Supreme Court of Canada wrote that a patient has a right to refuse treatment, even treatment that could sustain life. They said that people “have a right to choose how [their] body will be dealt with.” Also, that a doctor “has no choice but to accept a patient’s instructions to discontinue treatment.”
2. Voluntary Stopping of Eating and Drinking (VSED)
VSED does not included the normal biological response to stop eating and drinking that often comes at the natural end of life.
VSED is an explicit and deliberate decision made by someone where MAiD (Medical Assistance in Dying):
Is not a morally viable option
Is difficult to arrange due to a rural location
Would be delayed because death is not reasonably foreseeable
Is no longer an option because of diminished capability due to cognitive decline.
Dehydration will usually result in death in 14 days and evidence shows that death is peaceful, painless, and dignified. Adults considering this option are urged to seek palliative clinician advice and support before and during the course of VSED.
3. Voluntary Stopping of Personal Care (VSPeC)
Author’s Note: In my experience, this is more a decision due to ‘I’m done’ than a clear, informed choice. It comes from any or all of the following occurring as a result of significant frailty or disease:
Severe and continuous pain.
Not being able to tolerate being turned one more time (turning can be painful and grueling as often as every 2 hours for months or years)
Necessary use of an overhead lift and sling (it is very uncomfortable and undignified)
Painful and never-ending pressure sore wound care treatments
No longer able to self-feed and the necessity of being spoon-fed: eating has become a way to survive rather than thrive).
When a frail adult nearing the end of their lives closes their mouth and turns away from a spoon for several or all meals; when they cry ‘no more’ when staff come to turn or get them up; or when they say, “I’m so tired. I’m done,” it is a call for action and not merely the mutterings of someone who is ‘depressed’ or ‘senile’.
Loved-one and staff should see and hear these literal cries as a moment to purposefully speak to substitute decision makers and re-evaluate care plans and level of resuscitation orders, and wherever possible, clearly and deliberately ask the adult if they want personal care (and treatments) to be stopped.
Currently, an adult must be capable of making a request to have MAiD. But that informed decision is often not an option when we have advanced cognitive decline or when serious illness that results in severe pain results in weakness, severe brain fog, or requires the use of significant doses of mind-altering opioids.
Recent changes to MAiD legislation took away the requirement that “Death must be reasonably foreseeable,” (see the next education blog) but there are still some significant hurdles to cross to qualify. These hurdles often means that adults will choose to stop treatments that will keep them alive, or that withdrawing treatments will mean that their death will be reasonably foreseeable, reducing the waiting period.
The most likely use of VSPeC as an alternative to MAiD will be patients refusing spoon feeding through an advance directive. For example, a person has dementia and would like to keep living until after they have lost decision-making capacity, but not after they have reached the point of needing to be kept in a locked ward in a hospital unable to recognize their family and friends and unable to enjoy the activities that gave their life meaning.
~ End-of-Life Law & Policy in Canada, The Health Institute, Dalhousie University
4. Palliative Sedation
While palliative sedation refers to the intentional use of pharmacological agents to induce sleep for relief of distressing symptoms, usually used in the last hours or days of a terminally ill patient, it is not really a choice made by the patient. It is often a last resort made by clinicians in consultation with substitute decision makers when all other solutions to treat pain have been exhausted.
While the goal is to avoid giving opioids and sedation at high enough doses to cause respiratory (breathing) depression (slow rate and shallow breathing resulting in low oxygen levels), the patient will no longer be able to eat or drink and artificial hydration (IVs) or feeding (tube feeding), so the patient will likely die within days.
If you have a diagnosis of a life-threatening or life-ending disease – most particularly cancer – and being in severe pain is a concern, it is important to have a discussion with your palliative care team as early as possible to ask and give consent for this level of pain management.
5. Medical Assistance in Dying (MAiD) is discussed in detail in the next education article.
A request for MAiD will likely always require a separate document than making an Advance Request in an Advance Directive:
MAiD requests must be made while the adult is still capable. This ensures that there is no undue influence in their decision making and that they understand the procedure and consequences.
An Advance Request is made to be initiated for a time when the adult is no longer capable. Currently this cannot include a request for MAiD.
See the next article on MAiD for more information on Advance Requests and the push for law makers to change this legislation.
Note: If you are considering MAiD… keep your options open. Many adults put all of their effort into having a MAiD death and then their disease progresses suddenly or a health crisis occurs and MAiD has to occur earlier than planned or is no longer an option.
While crystal balls don’t exist – and we might not use them even if we did – being informed now regarding your future care can reduce stress, increase communication, and lay the groundwork for future decisions.
Put Your Request for Future Withdrawal of Care or Treatment in Writing
This is an example of putting all options together in an Advance Directive. It was written by a dear friend and leader in the end-of-life world. She is very clear of when she wants treatments and personal care withdrawn, and when conversations about MAiD should be started. She said that readers are free to use and modify it.
There is a history of Alzheimer’s disease in my family and I am clear that dying with advanced dementia would be insufferable to me. When it is available, I would want to hasten my death with Medical Assistance in Dying if I am diagnosed with dementia.
When I can no longer remember where I am, who my family is and when I can no longer feed myself or carry out my own personal care due to cognitive impairment, I want to die. I never want to live in a residential care facility/ nursing home.
I would want treatments withdrawn when any one of the following conditions are present:
I don’t know who I am; I don’t know my name, my life circumstances or my history.
I don’t know where I am; I don’t know I’m home when I am in my place of residence.
I don’t know the names of my closest family members or their relationship to me.
I can’t feed myself the food that is before me due to cognitive impairment.
I can’t carry out my own personal care and toileting due to cognitive impairment.
When the any one of the above circumstances are present, even if I am deemed to have “only” a moderate level of dementia, I ask that you not treat infections, you don’t feed me, don’t give me IV fluids, and don’t give me oxygen except for comfort (as I do not want to die gasping for air). I want Level 1 interventions - comfort measures and pain relief for any medical conditions; I do not want antibiotics, restorative medicine, CPR or hospital transfer. If I am cognitively impaired, under no circumstances do I wish to be spoon-fed.
Role of End-of-Life Doulas
End-of-life (Death) doulas help navigate the healthcare system and make informed choices through education and empowerment. They are trained to offer physical, emotional, spiritual and pragmatic support to individuals and families before, during and after death. Much of their work is intuitive, responding to the needs and unique attributes of the people they serve. Services vary from guiding you in preparing your end-of-life plans, family caregiver support, creating personal comfort plans, vigiling with you and your loved ones through your final months and moments.
Both the End-of-Life Doula Association of Canada and the Death Doula Network of BC provide high-level education and membership. If you would like a referral to a trained EOL Doula, see Resources at the end of this chapter.
Resources:
End of Life Association of Canada
BC Hospice Palliative and Hospice Association
Canadian Hospice Palliative Care Association
VSED and VSPeC and Withdrawal of Treatment:
Supreme Court Judgement: Rodriguez v. British Columbia (Attorney General), [1993] 3 S.C.R. 519
Law and Ethics Oncology: Voluntarily Stopping Eating and Drinking is Legal—and Ethical—for Terminally Ill Patients Looking to Hasten Death.
End-of-Life Law & Policy in Canada: Health Law Institute, Dalhousie University
Withholding and Withdrawal of Potentially Life-sustaining Treatment
