Understanding Palliative Care and Self-Directed Death in Canadian Federal Prisons
Analyzing the need for palliative care and self-directed death among incarcerated individuals in Canadian federal prisons, this study explores key demographics, disease prevalence, mortality rates, and challenges in obtaining parole. With an aging prison population and higher disease prevalence compared to the general community, the research sheds light on the desire for end-of-life care within the prison system, focusing on mental illness, accelerated aging, and leading causes of natural deaths.
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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
Ask MS to provide Aging prison population Age on entry # of those >50
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
NEED/DESIRE FOR PALLIATIVE CARE AND/OR SELF-DIRECTED DEATH FOR INCARCERATED INDIVIDUALS
KEY DEMOGRAPHICS AGE PREVALENCE OF DISEASE MORTALITY IN CUSTODY
AGE 25% OF THE FEDERAL PRISON POPULATION IS >50 MORE INDIVIDUALS >50 COMING INTO PRISONS 39% INCREASE [2006-2016] MORE INDIVIDUALS GROWING OLD IN PRISONS LIFE SENTENCES: 25% OF FEDERAL PRISONERS INDETERMINATE SENTENCES INCREASING CHALLENGES IN OBTAINING PAROLE
HIGHER PREVALENCE OF DISEASE (INCARCERATED INDIVIDUALS VS. IN COMMUNITY) mental illness, especially depression, dementia, and cognitive impairment accelerated aging blood-borne diseases (eg hepatitis C, HIV) cancer, cardiovascular diseases, diabetes, asthma, other respiratory diseases
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
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
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.
RESPONSES TO NEED/DESIRE FOR CARE IN COMMUNITY, PALLIATIVE CARE, AND/OR SELF-DIRECTED DEATH
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 TERMINALLYILL INDIVIDUALS SUPPORT THOSE INDIVIDUALS AS THEY APPLY FOR RELEASE ON GROUNDS OF HEALTH ISSUES ENSURE SAFE TRANSITION TO COMMUNITY OR COMMUNITY INSTITUTIONS
CARE IN COMMUNITY THE LAW IN PRACTICE
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
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
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
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 30-60 DAYS THEN INSTITUTIONAL HEAD DECISION MAX 10 DAYS THEN ??? FOR REVIEW/APPEAL FEASIBILITY FOR ANY LENGTH OF TIME COST (NEED FOR ESCORT) BED AVAILABILITY
CARE IN COMMUNITY IN PRACTICE Parole by exception requests 2007-2017 350 natural deaths Reason for Request s. 121 Number of Requests Number of Successful Requests Unspecified Terminal Illness 8 6 (75%) 6 (86%) 2 (100%) 0 (0%) 7 Cancer 2 Brain Injury 1 Mental Health/Self-Harm End-Stage Liver Failure 1 0 (0%) 1 (100%) 6 (75%) 21 (75%) Amyotrophic Lateral Sclerosis 1 Unknown 8 TOTAL 28
OF 350 NATURAL DEATHS IN FEDERAL CUSTODY 28 REQUESTS FOR PAROLE BY EXCEPTION 8% 21 INSTANCES OF PAROLE BY EXCEPTION 6%
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
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
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)
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
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
ACCESS TO PALLIATIVE CARE REPORTED NUMBERS 2009-2010 TO 2014-2015 PC IN 50% OF NATURAL DEATHS 2013 35 EXPECTED DEATHS PC IN 88% 2015-2016 40 NATURAL DEATHS PC NEEDED IN 96% PC REPORTED IN 48%
ACCESS TO PALLIATIVE CARE CONCERNS NUMEROUS EXTERNAL REPORTS OF IMPROPER PRE-DEATH MANAGEMENT (2013-2015) 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
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
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
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
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
SELF-DIRECTED DEATH REFUSAL OF POTENTIALLY LIFE-SUSTAINING CARE PALLIATIVE SEDATION MEDICAL ASSISTANCE IN DYING (MAID)
REFUSAL OF POTENTIALLY LIFE-SUSTAINING CARE REFUSAL OF POTENTIALLY LIFE-SUSTAINING TREATMENT VOLUNTARY STOPPING EATING AND DRINKING (VSED)
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
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
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
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
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
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
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
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)
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
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.
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
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 IF ELIGIBLE MAID IS SCHEDULED TO TAKE PLACE IN A COMMUNITY HOSPITAL OR HEALTH CARE FACILITY MINIMUM OF TEN DAYS AFTER SECOND CONFIRMATION OF ELIGIBILITY
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) 8 REQUESTS FOR MAID 1 DEEMED ELIGIBLE, ALREADY IN COMMUNITY HOSPITAL, DIED BEFORE PROCEDURE PROVIDED
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)
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)
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
VULNERABILITY OVERINCLUSION EXCLUSION
