Ubc dementia+care


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Ubc dementia+care

  1. 1. Planning ahead: Advance Care Planning in Dementia Care Dr. Doris Barwich, FH PMD End of Life Care Pat Porterfield, VCH Regional lead for Palliative Care 1 1
  2. 2. Disclosures Dr. Doris Barwich & Pat Porterfield No disclosures 2
  3. 3. Objectives  Identifying practice supports for advance care planning (ACP)  Understanding substitute decision-making and advance directives in the new legislation  Identifying opportunities for ACP within the person's dementia journey 3
  4. 4. What is Advance Care Planning?  Process of capable adult discussing their beliefs, values, wishes or instructions for future health care with trusted family & health care provider while capable  May lead to written advance care plan  If no advance care planning done: Substitute Decision Maker (SDM) decides based on health care provider’s offer of medically appropriate care  Health care providers and substitute decision-makers must respect adult’s beliefs, values , wishes and instructions 4
  5. 5. Advance Care Planning  Ideally done by Family Physician  Ensure shared understanding of     Diagnosis & prognosis Concerns or fears Beliefs, goals and values Trade-offs they are prepared to make or “what would be worse than death”?  Documentation and conversation should include Substitute Decision Maker 5
  6. 6. ACP in Dementia Care What is unique about dementia & ACP?  Long course of illness, with changes in cognition early, therefore preparation very important  Lack of understanding of dementia as a life-limiting illness  Balancing wishes of person living with dementia with realities of care-giving  http://www.alzheimerbc.org/Living-WithDementia/I-Have-Dementia/Personal-Planning.aspx 6
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  10. 10. Health Care Decision making  Understanding that at end of life, if no ACP in place, others ( SDM) will need to make decisions  If person in denial, approach it as “asking all patients to think about this”  Addressing person’s values & beliefs:  What is important about Living Well?  What would be a good death?  Any strong beliefs which the person would want documented in an Advance Care Plan or an Advance Directive? 10
  11. 11. Consent issues  Decision making in health care based on principles of valid and informed consent  CONSENT: Consent is required for all types of health care provided to adults with two exceptions  Urgent or emergency health care, and  Triage of those presenting for care and their preliminary examination, treatment or diagnosis.  In all situations if the adult is not capable of providing consent a health provider must make reasonable efforts to determine whether the adult has a SUBSTITUTE DECISION MAKER or has made an ADVANCE DIRECTIVE specific to the proposed health care. 11
  12. 12. Valid consent  INFORMED: The health care provider explains the proposed treatment or course of treatment including:  The condition for which the health care is proposed  The nature of the proposed health care  The risks & benefits of the proposed health care that a reasonable person would expect to be told about  Alternative courses of health care (and when indicated, the likely consequences of no treatment)  The adult is capable of making a decision about whether to receive or refuse the proposed health care and the consent is specific to the proposed health care; is given voluntarily and is not obtained through misrepresentation or fraudulent means. 12
  13. 13. Substitute Decision Making ( SDM)  A SUBSTITUTE DECISION MAKER under law is obliged to express the instructions or wishes the adult expressed while capable.  If an adult is not able to give or refuses consent and it is not an emergency situation, healthcare providers must try and obtain consent from a Substitute Decision Maker in the following order:  Personal Guardian appointed by the court under Patients Property Act (also called Committee of the Person)  Representative: Named by capable adult through a Representation Agreement). Long-term  (Advance Directive: If both a Representative and an AD no SDM required if the Representation Agreement explicitly states that AD can stand alone and covers the specific health care decision)  Temporary Substitute Decision Maker (see page 20 of the Guide): Chosen by health care provider- bound by HCCCFAA, shortterm (21 days). 13
  14. 14. Personal Guardian  Appointed by the court under Patients Property Act by a judge of the Supreme Court (also called Committee of the Person)  Can give or refuse consent to any health care  Guided by the best interest of the adult 14
  15. 15. Representatives & Representation Agreements (RA)  A capable adult may name a representative in a representation agreement (RA) (and substitute)  Two types of RAs:  Section 7: Routine health care but not life-supporting care or treatment or issues re physical restraint, moving or managing the adult  Section 9: Includes the all of the above  Different than a Power of Attorney (financial issues)  Representative makes decisions based on wishes or instructions expressed while the adult was capable 15
  16. 16. Changes to Representation Agreements NEW September 1, 2011  No consultation with a lawyer is required to make a Section 9 representation agreement but suggested  A Representative may not be a paid caregiver or an employee of a facility in which the adult resides and through which the adult receives personal or health care services, with the exception of the adult’s spouse, parent or child 16
  17. 17. Advance Directives (AD) NEW September 1, 2011  Advance Directives are written instructions made by a capable adult to give or refuse consent for health care directly to the adult’s health care provider and witnessed by 2 people ( cannot be the representative or a personal care provider)  Acted on only when adult is incapable  If adult also has a representative, then decisions are based on instructions in AD  No TSDM is sought unless an exception applies 17
  18. 18. Advance Directive  A valid Advance Directive (AD) is relevant to the specific type of health care being proposed (e.g. resuscitation; dialysis; intubation & ventilation)  If the Advance Directive (AD) refuses consent to the health care in question a health care provider must not provide the health care or must stop & withdraw the health care if they subsequently become aware of an Advance Directive.  AD may not instruct providers to give treatment that is not medically appropriate 18
  19. 19. Temporary Substitute Decision Makers  Health care providers choose a TSDM (21 days) when the incapable adult needs health care and the:  Adult has not done advance care planning, OR  Advance care planning is an expression of wishes and a contact list of possible TSDMs and the  The adult does not have a personal guardian (Committee of the Person) appointed by the court or a representative, or the representative named does not have authority  The Advance Directive does not address the care the adult needs or is not medically appropriate care 19
  20. 20. Temporary Substitute Decision Makers  TSDM must be 19, legally qualified, willing and available  The following may be a TSDM (in priority order):  The adult’s spouse (legally married or cohabitating; same sex included)  The adult’s child (ranked equally)  The adult’s parent (ranked equally)  The adult's brother or sister (ranked equally)  The adult's grandparent – New (ranked equally)  The adult's grandchild – New (ranked equally)  Anyone else related by birth or adoption to the adult  A close friend of the adult – New  A person immediately related to the adult by marriage – New 20
  21. 21. In cases of conflict….  If there is no TSDM or if there is no agreement between equally ranked TSDMs – HCPs can appeal to the Health Care Decisions Team at Public Guardian and Trustee  In cases of conflict: Formal resolution process  A health care provider can apply to the court if they feel medically inappropriate decisions are being made or if a PGT appointed TSDM is not complying with his/her duties, OR  Any person if they feel that an AD is not valid on the basis of fraud or undue pressure or some other form of abuse or neglect 21
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  23. 23. Support for SDM/Caregivers: Be prepared for issues in illness trajectory At end of life:  Reduced intake: Decreased appetite & swallowing ability  Loss of independence & function -> Bedbound  Incontinence of feces and urine  Reduced immune response with frequent infections—pneumonia, UTI  Prone to delirium 23
  24. 24. Typical health care decisions which require SDM/AD Consent  May include wishes re these decisions in advance care plan  Investigations and treatments     CPR Use of feeding tubes Antibiotics for infections ? Investigations/treatments which may necessitate hospitalization  Mitchell et al: Importance of proxy’s understanding of prognosis and clinical complications on decisions re interventions 24
  25. 25.     Caregiver Support including Support with Decision-Making Care giving burden over years therefore pacing important Emotional burden therefore need for self care Importance of information on illness Emotional support for decision making process: e.g. Accepting natural death & Saying “no” (refusal of consent to aggressive measures) is OK 25
  26. 26. Practice Challenges for GPs  Patients are often home bound and so decisions often based on other’s assessment  The patient & their caregivers may not both be members of the practice…  As disease progresses, caregiver’s needs increase…is their GP aware of situation? 26
  27. 27. Community Supports  Alzheimer's Society: http://alzheimerbc.org/LivingWith-Dementia/Caring-for-Someone-withDementia/Personal-Planning.aspx;  Caregiver Programs  Home & Community Care:  Care coordination with Home Care: Home Support, HCN Long term care; Supportive care  Adult Day Care  Residential Care options 27
  28. 28. Resources/References  http://www.health.gov.bc.ca/hcc/advanc e-care-planning.html  http://www.trustee.bc.ca  http://www.seniorsbc.ca/legal/healthdeci sions/: Has link to updated Health Care Providers’ Guide to Consent to Health Care (2011)  https://www.bcma.org/news/advancedirectives  Mitchell et al. (2009). The Clinical Course of Advanced Dementia. New England Journal of Medicine, 361:1529-38 28
  29. 29. Questions Please type your questions below in the Q&A box. 29