1. Palliative care and self-directed death for incarcerated individuals Mapping the law, policies, and practices in Canadian federal prisons
Adelina Iftene, Assistant Professor, Schulich School of Law, Dalhousie University
Jocelyn Downie, Professor, Schulich School of Law, Dalhousie University

2. Aging prison population
Ask MS to provide
Aging prison population
Age on entry
# of those >50

3. Overview Need/desire for palliative care and/or self-directed death
Key demographics
Responses to need/desire
Care in community
Parole by exception, prerogative of mercy, temporary absence
Palliative care
Self-directed death

4. Need/desire for palliative care and/or self-directed death for incarcerated individuals

5. Key demographics
Age
Prevalence of disease
Mortality in custody

6. Age 25% of the federal prison population is >50
More individuals >50 coming into prisons
39% increase [ ]
More individuals growing old in prisons
Life sentences: 25% of federal prisoners
Indeterminate sentences increasing
Challenges in obtaining parole

7. blood-borne diseases (eg hepatitis C, HIV)
Higher Prevalence of disease (incarcerated individuals vs. in community)
accelerated aging
blood-borne diseases (eg hepatitis C, HIV)
cancer, cardiovascular diseases, diabetes, asthma, other respiratory diseases
mental illness, especially depression, dementia, and cognitive impairment

8. Mortality in custody
Approximately 66% deaths in custody are natural deaths
Average of 35 people annually die of natural causes in custody
Leading causes of natural death in custody
Cancer
Cardiovascular illness
Respiratory diseases
Liver issues
Infections

9. Mortality in custody
Average age of prisoners who died of natural causes = 55
Mortality rates for all causes of death are higher in federal custody than in community

10. THEREFORE… significant and growing number of incarcerated individuals who may want care in community and, if that is not possible, to receive palliative care and/or self-directed death in prison.

11. Responses to need/desire For care in community, palliative care, and/or self-directed death

12. CSC responsibilities Meet A Standard of care
Comparable to community
“professionalLY accepted standards”
“adequate” even if higher than community Standard
seek alternatives to incarceration for “palliative or terminally ill” INDIVIDUALS
support those individuals as they apply for release on grounds of health issues
ensure safe transition to community or community institutions

13. Care in community
The law
In practice

14. Care in community – the law
Criteria for eligibility for consideration for parole by exception (S.121 Correctional Release Act)
Commutation of sentence from prison to community if:
(a) Terminally ill;
(b) Physical or mental health is likely to suffer serious damage if the [prisoner] continues to be held in confinement;
(c) Continued confinement would constitute excessive hardship that was not reasonably foreseeable at the time the [prisoner] was sentenced; or
(d) [Subject of an order of surrender under the Extradition Act and is to be detained until surrendered]
EXCEPT (b) – (d) do NOT apply if life or indeterminate sentence

15. Care in community – the law
Criteria for whether to grant parole by exception
Sources: Commissioner’s Directives and Parole Board Manual
Objectives: Safe reintegration and rehabilitation
Factors:
Amount of time served
Type of conviction
Completion of correctional programs
Attitude during incarceration
Availability of a release plan
Employment and housing post-release
Risk assessment

16. Care in community – the law
Prerogative of mercy (s.748 Criminal Code)
In theory Available even if serving life or indeterminate sentence and not terminally ill

17. Care in community – the law
Temporary absence
“Temporary absences may be granted for the following purposes: medical reasons, to allow the [individual] to undergo medical examination or treatment that is not provided in the penitentiary”
But…
Time for “assessment for decision” max days then “institutional head decision” max 10 days then ??? For review/appeal
Feasibility for any length of time
Cost (need for escort)
Bed availability

18. Care in community – in practice
Parole by exception requests – – 350 natural deaths
Reason for Request s. 121
Number of Requests
Number of Successful Requests
Unspecified Terminal Illness 8 6
(75%)
Cancer 7
(86%)
Brain Injury 2
(100%)
Mental Health/Self-Harm 1
(0%)
End-Stage Liver Failure
Amyotrophic Lateral Sclerosis
Unknown
TOTAL 28 21

19. Of 350 natural deaths in federal custody
28 requests for parole by exception – 8%
21 instances of parole by exception – 6%

20. Concerns re: small # of Parole by exception
S.121 restrictions
only terminal illness if life or indeterminate sentence
50% of prison population > 50 years of age are serving life
Lack of administrative support
Parole officer must initiate pre-release process but caseworkers unwilling to do so
Process so lengthy and bureaucratic, applicants die before heard
“Substantive medical evidence” required yet hard to get
key terms (e.g. “terminal illness”) not defined
fear of liability

21. Concerns re: small # of parole by exception
Factors for whether to grant parole inappropriate for parole by exception at end of life
irrelevant for objectives and out of individual’s control
seriousness of conviction
attitude during incarceration
program attendance

22. Care in community – in practice
Prerogative of mercy
Couldn’t find any INSTANCES for illness
Temporary absence
9% died in cell
60% died in Csc regional hospital (unknown how long there)
31% died in community hospital (unknown how long there – likely very short length of time)

23. and they will need/want palliative care and/or self-directed death
THEREFORE… increasing number of individuals likely to spend course of last illness in federal prison
and they will need/want palliative care and/or self-directed death

24. Palliative care In prison or in CSC regional hospital
Standard for care
accepted = available in community and “professionally accepted standards”
query = higher duty of care
Lack of policy documents or data on the quantity and quality of palliative care

25. Access to palliative care Reported numbers
PC in 50% of natural deaths
2013 – 35 expected deaths
PC in 88%
– 40 natural deaths
PC needed in 96%
PC reported in 48%

26. Access to palliative care Concerns
Numerous external reports of improper pre-death management ( )
in 2013 only 36% of pre-death cases handled in a manner adhering to standards
lack of timely access to care, diagnosis, medication, counselling, and referrals
secrecy of CSC surrounding PC and refusal to take responsibility for mismanagement

27. Access to palliative care Concerns
long wait times to see medical specialists
lack of escorts for visits to community hospital (+ costs)
no 24/7 medical staff available
restricted ability of physicians to prescribe course of treatment
lack of ability to manage pain (availability of medication, direct observation)
inadequate medication pick-up model
lack of family engagement

28. Reflections Research is lacking
What data there is raise questions re: level of medical care and expertise available, consent and capacity, standard of care re: diagnosis and treatment

29. Reflections CSC needs better system of monitoring and keeping records
creates inability to hold CSC accountable for practices
hinders attempts to engage in concrete conversations about reform

30. Reflections
Need strategies to find alternatives to incarceration for individuals approaching end of life
Need to stop release to community for palliative care being contingent on factors outside control of individual or irrelevant to issue of safety of community
Need to improve palliative care in prisons for exceptional situations in which person who needs it cannot be released into community

31. Self-directed death

32. “Self-directed death”
Refusal of potentially life-sustaining care
Palliative sedation
Medical assistance in dying (MAiD)
Conclusion: the data is sparse. Some CSC indicate that on occasion some PC is provided, however this is called into question by OCI in their systemic mortality reports.
On the other hand, PC means management of pain, involvement of diverse staff, proper environment and family contact. Broader data indicate that none of these are possible in a systemic manner. This + lack of data and collaboration raises significant concerns.

33. Refusal of potentially life-sustaining care
Refusal of potentially life-sustaining treatment
Voluntary stopping eating and drinking (VSED)

34. Refusal of potentially life-sustaining treatment (including artificial nutrition and hydration)
Must have consent to treatment
Consent/refusal must be informed
Individual must have capacity to refuse (“understand and appreciate”) or valid advance directive or otherwise legally authorized substitute decision-maker
Right to refuse treatment even if consequence is death

35. Refusal of potentially life-sustaining treatment (including artificial nutrition and hydration)
For 34% of natural deaths refusal or non-compliance with treatment was a “relevant event”
For 28% of natural deaths, information not available

36. Concerns Refusals of treatment
Are individuals adequately informed?
Are they actually refusing treatment or, e.g., not able to attend infirmary?
Do they have meaningful alternatives? (e.g., treatment with endurable side effects)
Poor documentation re: circumstances of refusals results in lack of accountability and ability to engage in conversations re: reform

37. VSED
Force-feeding prohibited if individual had capacity to understand consequence of decision at time decision made to fast
Force-feeding required if hunger strike (once person loses consciousness)
VSED is not a hunger strike, therefore force-feeding is prohibited in response to VSED
No data on use or response to VSED in prisons

38. Concerns VSED Is it being/will it be used as alternative to MAiD?
Do they have meaningful alternatives? (e.g., treatment with tolerable side effects)
Lack of clinical competency to care for individuals dying through VSED
Lack of protocols for VSED
Lack of data results in lack of accountability and ability to engage in conversations re: reform

39. Palliative sedation
“the intentional administration of sedative medication to reduce a person’s level of consciousness, with the intent to alleviate suffering at the end of life. It includes both intermittent and continuous sedation, as well as both superficial and deep sedation. It may be accompanied by the withdrawal of artificial hydration and nutrition.”
Can hasten death (when artificial nutrition and hydration withheld and person is >14 days from death)
No data on availability or use of palliative sedation in prisons

40. Concerns Palliative sedation
Is it being/will it be used as alternative to MAiD?
Do they have alternatives?
Lack of clinical competency to care for individuals dying through palliative sedation
Lack of access to palliative sedation
Lack of protocols for palliative sedation
Lack of data results in lack of accountability and ability to engage in conversations re: reform

41. Medical assistance in dying
Permitted in Canada as of June 2016
incarcerated people not excluded
Implementation through 2017 CSC Guideline
MAiD deaths are exempt from Board of investigation or mortality reviews (but subject to quality management review)

42. Who can access MAiD? At least 18 years old
Capable of making decisions with respect to their health
Made a voluntary request
Gave informed consent to receive medical assistance in dying after having been informed of means available to relieve suffering, including palliative care

43. Who can access MAiD? Grievous and irremediable medical condition
they have a serious and incurable illness, disease or disability;
they are in an advanced state of irreversible decline in capability;
that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and
their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.

44. Key procedural safeguards
Request made in writing, signed and dated after having been informed of grievous and irremediable condition
Ten day waiting period between day request signed and day MAiD is provided (unless death or loss of capacity is imminent)
Reconfirmation of consent required immediately before providing MAiD

45. Maid process for incarcerated individuals
Written request to health services
Chief of health services, institutional physician or nurse practitioner meets with prisoner within five calendar days
First eligibility assessment is conducted within seven days by internal assessor
If eligible
Referred to external assessor
Maid is scheduled to take place in a community hospital or health care facility minimum of ten days after second confirmation of eligibility

46. MAiD data for incarcerated individuals
cbc report (February 25, 2018)
8 requests for MAiD
Three approved (2/3 already in community)
Access to information request (July 7, 2018)
1 deemed eligible, already in community hospital, died before procedure provided

47. Concerns maid ineligible FOR PBE but eligible for MAiD
Life sentence not terminally ill = no pBE but yes Maid
Meet health conditions to be considered for PBE but fail conditions for being granted pbe (e.g. failure to attend programs) = no PBE but yes MAid
not feasible to provide palliative or other end of life care in community but feasible to provide maid in community (days or weeks vs. less than a day)

48. Concerns maid Lack of availability of
Facilities in community for assessment/provision
Second assessors and providers in prisons (for exceptional circumstances in which transfer not possible, i.e., lack of facilities in community or impossibility of moving person without significant suffering or risk of loss of capacity)

49. Concerns maid
Need further reflection on issues specific to context of incarceration
Voluntariness
Role of Carceral context in suffering
Lack of meaningful alternatives
Decision-making capacity
Prevalence of mental illness
Informed consent
Lack of information re maid and alternatives
Suicide
High rates in custody
Complex Relationship to MAiD

50. Overinclusion exclusion
vulnerability
Overinclusion
exclusion

51. Questions & Discussion