Who should get admission to inpa-ent hospice/pallia-ve care beds?
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- Gordon Rice
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1 1 Ethics and Resource Allocation: How to Respect Human Dignity in the Making of Tough Choices Hospice & Pallia-ve Care Manitoba 19th Annual Provincial Conference Bashir Jiwani, PhD Ethicist & Director Fraser Health Ethics Services Who should get admission to inpa-ent hospice/pallia-ve care beds? pa%ent age Length of %me wai%ng James 50 Two weeks Tina 75 3 months Akbar 80 1 month An%cipated length of stay Ac-ve deteriora-on Longer term stay Has approached ac-ve deteriora-on, then improved so hard to say Acuity of physical pain Acuity of psychos ocial distress Family coping well Current place high medium no Acute care medium high medium low No family Stretch ed, but not in crisis Assisted living home Nursing care needs high medium high bashir@bjethicsincorporated.ca 1!
2 How do you respond to the system? You are a leader. A home care nurse calls you. She is going to visit a pa-ent today, whose family is doing the best they can to support their father who is dying. She knows that he and they want to stay at home, but may have ques-ons or need support. How do they access support aser the business day is over? You see this as a broader issue. You are very sensi-ve to the complexi-es of healthcare decision making and the challenges facing leaders and prac--oners at all levels, but feel the need to advocate for bever care for this popula-on. How do you engage the system about it? Who should get your -me? You are a home care nurse. You arrive at work on Monday morning and see the roster of pa-ents awai-ng your support. There are 20 pa-ents and families on the list. If you were to give everyone the -me they needed, it would take 80 hours. You have only 30 hours to allocate. Who should get your -me? bashir@bjethicsincorporated.ca 2!
3 1. Ethics, values & budgets 2. Ethics Dimensions of resource alloca%on 3. Three Parts of resource alloca%on policy 4. Tools/keys for engaging Unhelpful understandings ETHICS AS JUDGMENT God-Squad Ethics Police 3!
4 Unhelpful understandings ETHICS AS COMPLIANCE Ethics as living with integrity 4!
5 Budgets communicate values 9 Your decisions, ac-ons and aytudes are all based on your values and beliefs Your budget is a summary of what is important to you and how you will get there Values concern the actual decision you make (content) How you make the decision (process) 10! Respect Uncondi-onal posi-ve regard Empathe-c understanding Meaningful engagement of ideas In a fiduciary rela-onship: guiding decisions based on truster s values and beliefs In a rela-onship of in-mate partners: Collabora-on In a rela-onship of (what should be) public equals: Transparent decisions based on informed, inclusive, recursive, reflexive delibera-on bashir@bjethicsincorporated.ca 5!
6 Substantive Values: Models of Distributive Justice What is our understanding of jus-ce? Trea-ng everyone equally? Trea-ng everyone equitably? Maximizing overall happiness? Building community solidarity? Respec-ng individual liberty? 11 12! Differences in health Jus-fied (though unequal) Overall health between young and old Prostate cancer rates between men and women Unjus-fied (unequal and inequitable) Nutri-onal status between girls and boys Immuniza-on status between girls and boys Access to care based on race 6!
7 Inequity in Health 13! Inequali-es in health that are unjust/unfair Unjust/unfair if systema-cally put groups of people already socially disadvantaged at further disadvantage Systema-c inequality in health between more and less advantaged groups in society Groups at risk in Canada 14! Poor Homeless Aboriginal communi-es Immigrant & refugee popula-on People with physical and mental disabili-es 7!
8 Meritocracy and vulnerable populations 15! People with demen-a... have no knowledge les to convey to their children, they no longer are intertwined with the community but rather have lost the memory of rela-onships; and they are therefore easily transgressed and abandoned. (Post, 1995) MEGA ALLOCATION! Allocation levels: forward and back MACRO MESO MICRO 16 8!
9 17! Is equity a Canadian value? If so, this has implica-ons Within individual care programs Within the health system Within macro governmental policy For our outlook on foreign affairs 2. Salient ethics dimensions of decisions 18 Mandate of and rela-onships between decisionmakers Consulta-on of others Experts Those impacted Decision itself Decision follow up bashir@bjethicsincorporated.ca 9!
10 How a decision is made 19 Who speaks? How is difference dealt with? How are decisions made? What standards will be used to decide what counts as evidence? The process of decision making Implicit ra-oning Explicit ra-oning Discre-on of professionals Use of formal criteria Subjec-ve Transparent Sensi-ve to pa-ent needs? Accountable Focus on the quality of the story Fair? More sensi-ve to culture of facility than individual pa-ent needs? bashir@bjethicsincorporated.ca 10!
11 21 Decision making in a democracy The role and authority of Elites those in posi-ons of power But in a democracy Experts Clinical experts Experts about their own lives Publics The communi-es that the decisions are meant to serve 22! Respectful system level decision making Uncondi-onal posi-ve regard Empathe-c understanding Meaningful engagement of ideas In a rela-onship of (what should be) public equals: Transparent decisions based on delibera-on that is informed, inclusive, recursive, reflexive bashir@bjethicsincorporated.ca 11!
12 What decision is made Criteria for admission 23! Age Deservingness Seniority how long wai-ng Acuity of pain, symptom severity, need for symptom control Psychosocial care/crisis Risk to physical safety Poli-cal significance Pa-ent best interests Probable longer term stay Terminal care ac-ve deteriora-on Respite care Risk to family stress Con-nuing care Rehab Clinician s personal knowledge of pa-ent Dependency level Nursing care needs How are people supported? 24 bashir@bjethicsincorporated.ca 12!
13 parts of a resource allocation policy The criteria used Who uses the criteria The process by which the criteria are used Geoff, Tony, and Betty Ann agree to go on a holiday Geoff: family castle in Italy Tony: Montana Betty Ann: Hawaii 26 bashir@bjethicsincorporated.ca 13!
14 How about these criteria? Definite option Maybe Not an option Where does this take us? 27 Ok, how about this criterion Have a good time 28 bashir@bjethicsincorporated.ca 14!
15 OK, it s important that Access to fine wine access Access to family Within budget Good business facilities Access to mountain biking Exposure to new culture 29 Prioritized, it s important that Most important Access to fine wine Access to mountain biking Access to family Within budget ITALY, it is! Imortant access Good business facilities Exposure to new culture 30 bashir@bjethicsincorporated.ca 15!
16 But wait Geoff always gets his way! NOT Italy! Steps forward The skills of ethics Understanding our own values and beliefs Listening to others to understand the perspec-ves they are coming from Engaging in delibera-on respecoully Ar-cula-ng the ra-onale behind decisions Ac-ng on decisions, even when difficult 16!
17 33! For leaders Make decisions transparent Use systema-c processes Create a culture of appropriate consulta-on & engagement Support those impacted 34! Steps ahead for all of us Use systema-c processes for analyzing issues Use available ethics resources Push authority where appropriate Look aser yourselves bashir@bjethicsincorporated.ca 17!
18 35 Making ethics real at the system level We are guided by values, whether we recognize it or not To think about and act on the values we have reason to cherish, as opposed to values that have been subtly inculcated in us is to take control of our lives to be free Ethics as Freedom 36! 18!
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