Case review of medically assisted deaths on Vancouver Island
ABSTRACT
Background: Providing medical assistance in dying ceased to be illegal in Canada on 17 June 2016. In the months before the Criminal Code was amended with the passage of Bill C-14, a BC-wide committee was established to standardize the provision of medical assistance in dying. A Vancouver Island Health Authority (Island Health) working group was also established to coordinate all aspects of medically assisted death. After medical assistance in dying became legal, a case review was proposed to consider the assisted deaths that took place on Vancouver Island in 2016.
Methods: Data were collected on assisted death cases for 6 months beginning 17 June 2016. The Island Health working group on medical assistance in dying analyzed the data to determine patient age and place of death, geographic distribution of cases, the availability of prescribers and assessors, discernible trends in assisted deaths, and gaps in data collection.
Results: In the 6-month study period, 72 assisted deaths (37 male, 35 female) occurred in patients ranging in age from 49 to 96 (74.75) years. Assisted deaths made up approximately 2% of the total deaths in that time and took place at home (64%), in acute care (21%), in hospice (12%), and in residential care (3%). The geographic distribution of cases varied, with more assisted deaths occurring in South Island (62%) than in Centre Island (21%) and North Island (16%). Underlying conditions in patients seeking assisted death included neoplasm (57%) and organ failure (25%). In 69 cases (96%) death occurred with intravenous administration of medication. In three cases (4%) oral administration was used, with intravenous administration being adopted in one case after death did not occur by a previously agreed-upon time. Deaths were expedited in 25% of cases and took place within the 10-day “period of reflection” required by federal law.
Conclusions: On Vancouver Island, access to medical assistance in dying is restricted by the geographic distribution of prescribers, and the high percentage of South Island cases probably reflects ease of access in this more densely populated region. The large number of cases relative to population size on Vancouver Island is likely the result of demographic factors and greater awareness resulting from a history of assisted dying advocates in BC such as Sue Rodriguez and Kay Carter. With the data we have it is not possible to reliably report on the number of patients who made initial inquiries, the number who made formal requests and did not meet criteria, and the number who died without medical assistance or who decided not to go ahead with medical assistance in dying. Prescriber experience suggests that access to medical assistance in dying is inadequate relative to demand and that coordination is needed in all aspects of provision, data-gathering, and governance.
A total of 72 assisted deaths took place in the Vancouver Island Health Authority in the first 6 months after medical assistance in dying ceased to be illegal in Canada.
Background
On 6 February 2015 the Supreme Court of Canada ruled in Carter v. Canada and determined that under certain circumstances medical assistance in dying (MAID) should not be illegal. The Supreme Court ruling gave the government 1 year to amend the Criminal Code so that it was no longer an offence for a physician to help a patient wishing to die. This amendment period was then extended by a further 4 months to 6 June 2016. Parliament passed Bill C-14 on 16 June 2016 and it became law on 17 June.[1]
BC implementation
During the period before Bill C-14 became law, a province-wide committee was established with representation from the Ministry of Health and the Ministry of Justice; the provincial College of Physicians and Surgeons, the College of Registered Nurses, and the College of Pharmacists; the regional health authorities and the First Nations Health Authority; and the Coroners Service. Members of this committee communicated with similar groups across the country and openly shared resources. The aim was to prepare for the Criminal Code amendment by standardizing all aspects of the provision of medical assistance in dying. This work was done in the absence of any guidance from the federal government and without the certainty that legislation would be passed.
As a result of this committee’s work, the practice standards for all college registrants in BC are uniform, as are the procedures, forms, and prescriptions used. This provincial committee continues to meet and refine earlier work.
The Coroners Service is the recordkeeper of note for documents related to each assisted death case. In addition, the chief coroner has commissioned a MAID review panel with province-wide representation and a broad mandate that covers all aspects of quality assurance.
Vancouver Island implementation
In May 2016, the Vancouver Island Health Authority (Island Health) established a working group to coordinate all aspects of medical assistance in dying on Vancouver Island. As a health authority body, the MAID working group holds no sway over activities outside the realm of health authority facilities or not involving health authority employees, and because the majority of assisted deaths take place in the home, most are outside the scope of Island Health governance.
The physicians engaged in providing MAID (known as “prescribers”) readily agreed that standardization in the work of prescribers and other involved health professionals is important. Since implementation of MAID, prescribers have been very willing partners with the health authority in all aspects of data gathering, regulation, education, and provision. This has been a process of constructive collaboration between prescribers, assessors, the health authority, and other health authorities in the province. To date, the working group has gathered copies of all documents (except the medical certification of death) for all cases of MAID that have taken place on Vancouver Island. Island Health has set up a MAID coordinating centre with public access via e-mail and voicemail. In common with other health authorities, Island Health has also set up a public webpage and an extensive web-based resource.[2]
Methods
Data were collected on assisted death cases in the Vancouver Island Health Authority for a 6-month period beginning 17 June 2016. Some of the data were collected and managed using REDCap (Research Electronic Data Capture), a secure, web-based application hosted at Island Health.[3] The case review was conducted by members of the Island Health MAID working group, who analyzed data to determine the availability of prescribers and assessors, patient age and place of death, geographic distribution of cases, discernible trends in assisted deaths, and gaps in data collection.
Results
In the 6-month study period there were 72 assisted deaths, which amounted to approximately 2% of the total deaths on Vancouver Island in that time (7100 expected deaths in 2016/2017).[4] Patients ranged in age from 49 to 96 (74.75) years (Figure 1) and were evenly distributed along gender lines (37 male, 35 female). The number of cases per week varied during the study period, ranging from a low of 0 to a high of 9 (Figure 2).
Assisted deaths took place most often at home, but also occurred in acute care, in hospice, and in residential care (Table 1). The geographic distribution of cases varied, with more assisted deaths occurring in South Island than in Centre Island and North Island (Table 2).
Underlying conditions in patients seeking assisted death were neoplasm (57%), organ failure (25%), neuro-degenerative disease (11%), and other conditions (7%). In 69 cases (96%), death occurred with intravenous administration of medication. In three cases (4%), oral administration was used, with intravenous delivery being adopted in one case after death did not occur by a previously agreed-upon time. Deaths were expedited in 25% of cases and took place within the 10-day “period of reflection” required by federal law.
In the days immediately preceding the study (6 to 17 June 2016), MAID was not illegal, but there was no guiding legislation or regulation in place and no medically assisted deaths occurred on Vancouver Island during this 10-day period.
Prescribers
By 16 June 2016 Island Health had granted noncore privileges for providing MAID to five physicians based on training they received outside BC. Three had received training by attending the Euthanasia 2016 course in Amsterdam. Two had self-trained by reviewing the material provided by the Royal Dutch medical and pharmacist associations (KNMG and KNMP). By the end of the study period, 17 December 2016, there were 8 physicians able to provide MAID, another 4 were privileged but had not yet provided assistance, and a further 26 had completed the training required to apply for privileges. During the study period Island Health had not granted MAID privileges to nurse practitioners, although other health authorities in BC had done so, and this remains the case to date.
Assessment, referral, and timing
Patient assessments for MAID were completed by 45 physicians and 1 nurse practitioner, with 91% of assessments occurring in person and 9% by telehealth. Two additional backup assessments of capability to consent were completed by psychiatrists.
Prescribers received referrals from the Island Health MAID office and from physicians in many branches of medicine. Four of the prescribers accepted self-referral from patients.
Bill C-14 requires 10 clear days between completion of the request and provision of MAID. The day on which the request is completed and the day of assisted death do not count toward the total of 10. If the patient, prescriber, and assessor agree that the patient’s condition merits expediting the death, then this can occur.
In the 6 months analyzed here, the period between a request and assisted death ranged from 0 to 116 days. In 18 cases (25%) the period was less than 10 days, which mirrors the Dutch experience. Reasons for expediting MAID included rapidly deteriorating condition, likelihood that death would occur in less than 10 days in a manner the patient did not want, and threatened loss of capability to consent.
Facilities
Although many medically assisted deaths took place in the patient’s home (64%), others took place in health care facilities. In June 2016 Island Health announced that MAID would be available in all appropriate health authority facilities. A policy was developed to enable admission to hospital specifically for MAID based on the underlying condition and as close in time to the planned death as practicable. This option was used in less than 10% of all cases.
In hospices, MAID has only been available for patients already in hospice and whose care trajectory and wishes have changed, or for patients who have been admitted repeatedly as inpatients for palliative care. St. Joseph’s Hospital and the associated hospice in Comox, and Mount St. Mary’s Complex Care in Victoria do not permit MAID or MAID-related activities on site and require that patients be transferred.
The palliative care community across Canada has demonstrated receptivity to MAID. In Victoria, two of the Island Health prescribers contacted the Victoria Hospice and took part in a constructive dialogue about concerns with the hospice team. As a result, the hospice team developed guidelines for approaching MAID in both inpatients and outpatients who have been receiving palliative care from the hospice team. This approach has been used across Vancouver Island and has resulted in a relatively smooth transition to care that involves the option of MAID, and is reflected in the nine hospice deaths reported in the study.
Conclusions
The high percentage of South Island cases (62%) relative to the region’s population size (49% of all Vancouver Island) probably reflects ease of access: South Island is more densely populated and prescribers have shorter distances to travel when asked to provide assistance. Furthermore, the low percentage of Central Island cases (21%) relative to population size (33% of all Vancouver Island) may be because the three prescribers in Centre Island did not start providing MAID until much later in the 6 months analyzed here.
The relatively large number of cases at the outset of the study (five cases in the first 2 weeks after 16 June 2016) can be explained by the fact that the patients in these cases had completed requests and been assessed while waiting for the passage of Bill C-14.
The total number of cases studied was too small for reliable regression analysis. However, there were never fewer than two cases per week from 18 August to 17 December 2016, and the impression among prescribers, based on the frequency of consultations, is that demand is rising steadily.
In the Netherlands, assisted deaths account for approximately 4% of all deaths.[5] The 72 assisted deaths on Vancouver Island (population 748 000 in 2016, 2.4% of the total Canadian population) amounted to approximately 10% of estimated MAID cases in Canada at that time, although national statistics are incomplete and may be unreliable.[6]
While the data we have gathered do not provide an explanation for the large number of cases relative to population size on Vancouver Island, this is likely the result of demographic factors (patient age, education, income), history (Sue Rodriguez lived in Victoria; Kay Carter, Margot Bailey, and Gillian Bennett were all from BC; and the first local chapter of Dying with Dignity was established on Salt Spring Island), and greater awareness resulting from this history.
With the data we have it is not possible to reliably report on the number of patients who made initial inquiries, the number who made formal requests and did not meet criteria, and the number who died without medical assistance or who decided not to go ahead with medical assistance in dying. It is also not possible to accurately assess the number of cases of MAID in Canada at any time because there is no coordinated MAID program and no agreed data-gathering criteria. BC is developing the necessary programs to do this within the province.
Access issues
Access to medical assistance in dying is inadequate relative to demand and is not uniform. Individual health practitioners are free to opt out of prescribing or being directly associated with the provision of MAID. One prescriber in this study, a physician with a large number of elderly patients in his practice, has provided medically assisted death for three of his own patients, which suggests that local prescriber availability may increase selection of MAID by eligible patients. Prescriber experience also suggests that demand is not being met, and that if more physicians were prescribers more patients would seek and be able to access this service.
Faith-based facilities in BC are empowered to opt out of providing MAID or allowing MAID- related activities on site. However, citizens who satisfy the criteria laid out in Bill C-14 have a right to MAID, regardless of the beliefs of their physicians or hospital bylaws. The medical system as a whole has an obligation to make medically assisted death available. The majority of cases will take place outside health authority facilities, but will still involve health authority employees such as nurses who will assist the prescribers or nurse practitioners who will provide MAID. Uniform access requires the development of coordinated programs shared by independent physicians, health care facilities, and health authority employees. Uniform access for all citizens will also require that more physicians and nurse practitioners become prescribers or that travel time be paid at a rate comparable to what the health professional would otherwise earn in the course of a normal workday.
Fortunately, access to the drugs required for assisted death has not been an issue. Prescribers and pharmacists have worked closely to ensure effective processes and rigor in maintaining the standardized protocol.
Summary
Medically assisted deaths on Vancouver Island during a 6-month period accounted for 2% of all deaths and this rate will probably increase. Patients ranged in age from 49 to 96 and included similar numbers of males and females. By the end of the study, patient assessments had been completed by 45 physicians and 1 nurse practitioner, and medical assistance in dying had been provided by 8 prescribers. It was not possible to determine the number of patients who made initial inquiries about MAID, who made formal MAID requests and did not meet criteria, who died without medical assistance, or who decided not to go ahead with medical assistance in dying.
At present, access to MAID is not uniform or sufficient to meet demand, and there is a need for coordination in all aspects of provision, data-gathering, and governance.
Competing interests
None declared.
This article has been peer reviewed.
References
1. Parliament of Canada. An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying). S.C. 2016, c. 3. Accessed 22 April 2017. www.parl.gc.ca/HousePublications/Publication.aspx?DocId=8384014.
2. Island Health. Medical assistance in dying (MAID). Accessed 22 April 2017. www.viha.ca/MAID/.
3. Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009;42:377-381.
4. BC Stats. Sub-provincial life expectancy: Vancouver Island, 2011-2015. Accessed [DD Month] 2017. www.bcstats.gov.bc.ca/apps/VitalStatistics.aspx. (To generate report, highlight Vancouver Island, 2011-2015, Total, and Generate Output.)
5. Sibbald B. MAID in the Netherlands led by physicians. CMAJ 2016;188:1214-1215.
6. Slaughter G. At least 744 assisted-deaths in Canada since law passed: CTV News analysis. 28 December 2016. Accessed 22 April 2016. www.ctvnews.ca/health/at-least-744-assisted-deaths-in-canada-since-law-p....
Dr Robertson is an executive medical director and executive lead on medical assistance in dying (MAID) for Island Health. Dr Pewarchuk is an internist and MAID prescriber. Dr Reggler is chair of the Physician Advisory Council, Dying With Dignity Canada, a family physician, and MAID prescriber. Dr Green is a family physician, MAID prescriber, and founder of CAMAP (Canadian Association of MAID Assessors and Prescribers). Drs Daws and Trouton are family physicians and MAID prescribers.