Heritage Group meeting of September 19, 2019.
Leslie welcomed Tanis Newsham, a Psychosocial Program Specialist with WRHA’s Medical Assistance In Dying Team, to speak to the Heritage Group. Tanis holds a Masters of Social Work degree from the University of Calgary. She joined MAiD with over 20 years of experience as a clinical social worker. She has worked extensively with people who are dealing with acute and/or chronic medical issues, and issues of grief and loss, and has a broad range of assessment, crisis intervention, and clinical counselling skills. Tanis has been an active member of the Manitoba College of Social Workers, and is currently a board member of the College and the Chair of the MCSW Complaints Committee. Tanis joined the MAiD team in August of 2017.
What is Medical Assistance in Dying (MAiD)?
There are two types of MAiD available to Canadians. In the first, self-administered MAiD, a physician who approves the request prescribes oral medications for the patient to self-administer. In the second, clinician-assisted MAiD (the only option currently available in Manitoba), a physician who approves the request administers intravenous (IV) medications.
Who can provide MAiD?
Federal law stipulates that only a physician or nurse practitioner (NP) can provide MAiD, though only physicians can currently do so in Manitoba (NPs can’t currently complete death certificates in MB).
That being said, patients might encounter conscience-based objection, where a physician’s personal values or beliefs conflict with a legally available procedure such as MAiD. And though not required to participate in MAiD, all health care providers have a professional responsibility to respond to a patient’s request and to continue to provide non-MAiD related medical care (non-abandonment). Doctors must also ensure timely access to a resource that will provide accurate information and to make medical records available.
Who is eligible for MAiD?
Essentially, any adult (18+ years) who is eligible for government funded health services (no tourists), and who is capable to make medical decisions is eligible, provided they are suffering from a grievous and irremediable medical condition. In addition, requests for MAiD must be voluntary and not the result of external pressure. Informed consent is required after a review of all available options, including palliative care, which is embedded in law and therefore a key part of MAiD.
A variety of medical conditions can be considered grievous and irremediable. But to qualify for MAiD, a patient must be enduring intolerable suffering from a serious and incurable illness, disease or disability, must be in an advanced state of irreversible decline in capability, and natural death must be reasonably foreseeable.
MAiD is not presently permitted for minors, in advance directives or living wills, or where mental illness is the sole medical condition. However, these exceptions were under review by three expert panels whose reports were due at the end of 2018.
WHEN can MAiD occur?
The law requires a minimum of ten clear days from written request to MAiD (there is no maximum). This time may be shortened if the patient is at imminent risk of death or of losing the capacity to provide consent. Patients must both be given the opportunity to withdraw their request and have the capacity to provide consent immediately before MAiD.
WHERE can MAiD occur?
MAiD is about evenly split between at home and in an institution (hospital, personal-care home, long-term care facility), with hospital being the most common facility type. Some faith-based facilities such as the St. Boniface, Concordia, and Misericordia hospitals and some personal-care homes do not allow MAiD, but not all faith-based facilities are abstaining. Most will allow the eligibility review process to occur on site and only transfer if/when a patient chooses that option. Deer Lodge Hospital, for example, has a dedicated suite for MAiD provisions. And though it can be disruptive, provisions are done at Deer Lodge when patients need to be transferred from an abstaining facilities.
HOW – Overview of the MAiD process
All Canadian jurisdictions share the same eligibility criteria: a written request, a ten-day reflection period, and two independent reviews from medical doctors or nurse practitioners. Manitoba conducts the eligibility reviews with a multidisciplinary MAiD team that also considers unmet needs. It is important to note that this is not an emergency service, and takes a minimum of two weeks.
In Manitoba, there are two physician team review meetings, each with different team members. Following the second review, the two teams meet to decide whether to approve. If approved, patients are notified by letter and a phone call, and it is left to the patient or an advocate to make further contact. Though the process normally takes about 2 weeks, it can be faster for cases where the patient’s condition is dire and natural dying would be insufferable.
HOW – Manitoba’s MAiD Team
Unique to Manitoba, a single interdisciplinary team serves as the central consultative and practical resource for health care providers, patients and families. The team consists of physicians, nurses, social workers, pharmacists and speech language pathologists. Part of a newly created provincial health organization, Shared Health, the team travels all over the province, involving lots of flying and driving. Its purpose is to provide, not promote MAiD. And though the team is set up to provide all parts of MAiD, it welcomes participation from other health-care providers.
Interestingly, all but one of Manitoba’s MAiD physicians are women. The role of the speech language pathologist is to help patients who have communication issues (e.g. esophageal cancer, Lou Gehrig’s disease, non-verbal).
HOW – Death Certificate
MAiD details are shared only with Vital Statistics. Death certificates are completed with the cause of death listed as the patient’s underlying illness, and the manner of death as natural. A funeral home does not need to know about MAiD. The team removes any IVs, and there is no evidence on the body of assisted dying.
Cause of death = underlying illness
HOW – Description of Provision
Three separate IV medications are administered over a ten to fifteen minute period: a sedative, followed by an anaesthetic, and finally a muscle relaxant. Death is very peaceful. The patient loses consciousness in two to three minutes, breathing stops in five to six minutes, and the heart stops in eight to ten minutes. There is no incontinence, seizuring, or movement.
HOW – Other Points
There is no cost to the patient for MAiD, and it is not a question of MAiD vs palliative care. Palliative care is continuum care, while MAiD is a mode of death. A patient can and should have access to both.
An amendment to the criminal code with reference to suicide has been removed, so that MAiD has no impact on a patient’s insurance.
Family involvement is not required for other treatments, so MAiD is no different in that respect. But if a patient does not wish to include family, the team would explore why, and encourage him or her to consider involving them.
Tanis has attended about 130 MAiD cases. The youngest at an assisted death was a four-year old at his Grampa’s. Tanis provided handouts on helping children and youth with assisted dying. Copies were also sent in electronic form to HG members via email.
WHY – Common Themes
The desire for MAiD is rarely driven by uncontrolled physical symptoms. More commonly it is a question of autonomy and a desire to not lose control: “I don’t want to linger.” Or it can be the fear of lost independence or identity: “I am done.” Many do not want loved ones to have to clean up after them. Patients drive the process. They want to be the “captain of their own ship”.
A patient’s desire for MAID is not related to the type of care they are receiving from the medical team and their family, it is related to their core identity and values. Though the MAiD option is new, the desire to die is not. End-of-life conversations don’t need to change. People will want MAiD despite optimal care, and a request for MAiD does not equate failure.
Manitoba MAiD Statistics as of August 31, 2019
- Some 1318 contacts
- 616 written requests
- 42 in 2016
- 142 in 2017
- 238 in 2018
- 193 in 2019
- 335 died assisted
- 24 in 2016
- 63 in 2017
- 138 in 2018
- 110 in 2019
- 184 requests declined
- Lacked capacity
- Death not foreseeable
- 184 in hospital / 135 at home / 6 in hospice
- 175 female / 160 male
- 223 cancers / 74 end-stage organ failure / 37 neurodegenerative
- Average age 75, with a range of 29 to 101 years old
Though the stats suggest that Manitoba is very busy, MAiD still accounts for less than 2% of all deaths in MB; in Europe it is 4%. The 184 requests declined due to lack of capacity were due to patients losing capacity before first or second assessments, or at the time MAiD was to be provided (which can happen, for instance, when cancer metastasizes to the brain). One cannot be approved without meeting the legal criteria of capacity. 100 people who were approved never called; their natural death went well. ALS, MS (High in MB), and Parkinson’s are some of the neurodegenerative diseases that lead people to request MAiD.
HOW – To Communicate
Tanis showed a video called Kari’s Reasons. Kari had end stage kidney disease, had had three transplants and multiple admissions to Intensive Care and Emergency, and four years on dialysis. She knew how she did not want to die. Kari knew she was facing a slow death, but didn’t know how sick she was going to get or what the end result was going to look like. She wanted to choose the date and the time. Before her approval for MAiD she would wake up at 4 a.m. with terrors, lie in bed and picture what death was going to look like. She lived in fear and never got a good night’s sleep. Once approved for assisted dying she had an immediate sense of joy and purpose. She had taken care of the process of dying and now could concentrate on living. She could die on her own terms and she didn’t want to stop dialysis. In the video she states,” I have made my amends with family and friends and I want to focus on living, I do not want to die in hospital having friends and family holding vigil, I want to die on my own terms”.
A good first step in exploring a desire to die is to visit the Canadian Virtual Hospice, a Website at virtualhospice.ca that provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. Tanis recommended the article on the site, Sit Down & Lean In, by Dr. Mike Harlos, exploring suffering, including when someone has expressed a wish for an assisted death. It is important to clarify the difference between being ready to die vs wanting help to die.
Providing info is one thing, recommending another. Counselling someone to end their life is still a crime. It is OK to let patients know that MAiD is legal and available, or to help connect them to resources.
Questions followed Tanis’s presentation. Here are a few of the highlights of her answers:
- Tanis follows up after 2 weeks, 6 weeks, and 6 months with families. There is a support group 2 times/yr.
- Patients are encouraged to have others with them.
- It is important to have a healthcare proxy, so that someone can speak “as if they are you”, not for you. Included this in a healthcare directive.
- Power of Attorney is not the same as a healthcare proxy. The proxy can only speak on medical issues.
- It is currently not actionable to have MAiD in a healthcare directive (ie a physician cannot legally provide MAiD via a healthcare directive), however putting it one’s healthcare directive does provide information about one’s values and goals of care..
- MAiD has opened up earlier conversations with family; better than waiting until a crisis.
- Hiding MAiD from children to protect them doesn’t work. Better to provide them with information, as they often wonder, “What’s going on that they are not telling me?”