Romayne Gallagher MD, CCFP Divisions of Residential and Palliative Care Providence Health Care Vancouver, BC
My father s memory may be gone but otherwise he is all there Daughter of 92 yr old in wheelchair, advanced dementia with anorexia and dysphagia All she needs is a little fluid and then she pops right back Family of 97 year old with advanced dementia after multiple trips to ER for rehydration
We need to make him eat because he has NPH insulin daily Nurse of resident with brain tumor and DM The licensing board monitors weights of the residents on a monthly basis to prevent elder abuse Dietician speaking of trying to keep weight stable in residents with advanced disease
She has become less responsive could it be the increase in the opioid dose? Nurse of advanced dementia resident on opioids for months for pain, open leg ulcers, temp = 39C, RR 24 Yes but are they distressed? Physician after being told that resident s respiratory rate is 44
Therapies to modify disease or improve function Palliative Care Presentation Therapies to relieve suffering and/or improve quality of life 6m Bereavement Care Death
Number of persons between ages 20 and 64 45 40 35 30 25 39.5 37.8 34.6 31.2 29.3 28.4 26.0 21.8 Number of persons 20 to 64 to each person 85+ 20 15 10 17.3 14.5 12.4 11.4 5 0 1998 2000 2005 2010 2015 2020 2025 2030 2035 2040 2045 2050 Wiener J. from US Census data
Prognosis often uncertain, right up to the end of life A patient with serious chronic heart failure has 50-50 chance to live 6 months on the day before death Labeling some patients as palliative and others not will not work Is RAI-MDS helpful?
Gill et al. NEJM 2010
Make it part of your practice It is an approach to care combined with specific knowledge and skill set Know how to access palliative care teams and when you would need them Complex symptom management Complex family or psychosocial needs Goals of care not certain
Therapies to modify disease and/or improve function Residential Care Palliative Approach Presentation Therapies to relieve suffering and/or improve quality of life Death Bereavement Care
Symptom-based approach to care Outcomes based on resolution of symptoms rather than disease indices Understanding patient and family life goals Care for body/mind/spirit Improve quality of living
Prevalence exceeds 50% in residential care Antipsychotics are usual drug of choice Atypical antipsychotics associated with increased CVA and mortality Chronic pain in residential care: 50-80% prevalence Neuropathic pain common
Cluster randomized trial of a stepwise protocol for pain and its effect on BPSD 352 moderate to severe dementia patients Randomized to stepwise pain medication vs usual care over 8 weeks Followed agitation, aggression, pain observation scales, function, cognition at baseline, during and after trial Husebo et al. BMJ 2011
Most therapy trials exclude patients over 70 due to reduced ability to complete study Most trials are based on a single disease in order to assess effect of drug/therapy The outcomes are based on disease indices rather than quality of life outcomes
Tight glycemic control may not improve dementia, and may worsen cognition Poor control may worsen cognition. Hyperglycemia (hyperosmolar state) and hypoglycemia can both precipitate delirium. J Am Geriatr Soc. 2003; 51(5 suppl):s265-s280 Diabetes Care 1998; 21:231 235
Atypical presentation: personality change, ADL change, delirium, obtundation. Many predisposing factors: Age-related decrease in gluconeogenesis Unawareness (reduced adrenergic symptoms, underlying dementia) Under-nutrition Polypharmacy Social isolation
Establish patient s health goals and preferences. Help patient to prioritize treatment options for diabetes and other medical conditions consistent with patient s goals, the magnitude and time to benefit. Evaluate and manage geriatric syndromes. Estimate life expectancy within same agesex cohort by considering overall health and physical function. JAMA. 2006; 295:1935-1940
Establish patient s health goals and preferences. Estimate life expectancy within same age-sex cohort by considering overall health and physical function. Consider intensive glycemic targets if: Lower risk of hypoglycemia Existing microvascular complications Life expectancy > 8 years Consider more conservative goals (symptom management) if : Higher risk of hypoglycemia (e.g. severe dementia) Heavy burden of medical illness Difficulty with drug adherence Significant risks from intensive management of vascular risks Short life expectancy JAMA. 2006; 295:1935-1940
The End of the Disease Era Mary E. Tinetti, MD, Terri Fried, MD Am J. Med. 2004;116:179 185.
Acute care: 75% of decisions in patients with life-threatening illness Residential care: >70% of all decisions Find the process highly stressful 82% of SDM decision-makers in ICU life/death decisions had PTSD symptoms Azoulay E et al Crit. Care Med. 2005
Most surrogates feel unprepared May not know patient preferences May only know preferences for catastrophic situations Often use their own hopes, needs to inform their decisions Vig et al JAGS 2006; Fagerlin et al Health Psychol 2001; Vig et al J Gen Int Med 2007
Interviews with 246 SDM 55% agreed they made decision 75% wished decision to be shared with physician Asked if it was discussed: benefits (80%) risks (72%) option of no tube (67%) asked if they understood information (85%) 28-41% wanted more information Lewis et al. Patient Educ. Counseling 2006
728 adult outpatients attending Oregon internal medicine clinic 69% refusal of treatment 46% withdrawal of treatment 41% relief of symptoms vs length of life Education, being a health proxy correlated best Having an advance directive did not Silveira MJ et al. JAMA 2000; 284: 2483-2488
Semi-structured, in depth interviews with 30 elders with chronic disease and their caregivers Recurring factors affecting EOL decision making: Expected quality of life Emotional and financial cost of treatment Likelihood of treatment success Effect of treatment on longevity Rodriguez, Young. J Med. Ethics 2006
Over 1/3 of patients changed their preference s for life sustaining treatment over a 2 year period Illness, treatment and hospitalization influenced people s wishes The healthy are more likely to prefer death to disability
The skills to enable access, understanding and use of information for health The degree to which individuals have the capacity to obtain, process and understand information and services needed to make appropriate health decisions It requires more skill than literacy
48% of Canadians do not have adequate literacy (level 1 & 2) 60% of Canadians do not have the necessary skills to adequately manage their health (level 1 & 2 in health literacy assessment)
What are the factors associated with low health literacy?: Age (cognitive decline, disuse) Chronic Illness Stress Education Language
80 African Americans and 64 Whites visiting their family physician Health literacy measured Verbal description of advanced dementia followed by questions on preference for care Two minute video of advanced dementia followed by questions on preference for care Volandes et al. J Palliative Medicine 2008
After verbal description, low health literacy predicted those who choose more aggressive interventions OR 5.1-7.1 After watching video there were no significant differences in preference for care by race or health literacy Volandes et al. J Palliative Medicine 2008
Decisions that are shared by healthcare provider(s) and person(s), informed by the best evidence available, weighted according to the specific charactaristics and values of the person(s)
Patient preferences for amount of information degree of involvement in decision-making preferences, values, goals etc Information presented by the clinician the nature of the condition treatment options including the option of no treatment or withdrawal of treatment risks and potential complications of the treatment the probability of success of the treatment options
The clinician makes a recommendation The patient/family/clinician decide on an option for treatment
Incorporates patient preferences, values, goals into clinical decision making Allows different models of decision-making e.g. patient decides, family decides, patient + family etc Multiple options, stressful situations, lack of surrogate or patient experience with decision-making
Clinicians need to communicate the connection between daily events (lack of appetite, poor swallowing, UTI, dyspnea etc ) with the natural course of the disease (increased infection risk with advanced dementia, lack of appetite is natural in all advanced illness) Clinicians must communicate the natural process of dying to families
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What are we asking from the SDM? Their role is to represent the values and preferences of the patient/resident How we phrase our questions: what would your mother prefer if she were in this situation What would your father consider a good outcome in this situation?
Patients/residents/family (PFR) have a good understanding of the illness and how it manifests itself in daily life PFR understand their rights in the health care system PFR understand their responsibilities in the health care system
Healthcare providers (HCP) respect the decision-making styles of PFR HCP are aware of potential conflicts for SDM Healthcare providers give PFR an accurate picture of illness (in a way that PFR can understand) and prepare them for the future
HCP do not let their own values and beliefs alter what options are presented and how they are presented HCP understand their responsibility in shared decision-making i.e. making a recommendation HCP understand their role in responsible use of healthcare resources
YES Start early Don t miss an opportunity Everyone on the team can contribute Consistency of the message
Use plain language Drawings, visual models, videos Teach back method Ask Me 3: What is my main problem? What do I have to do? What is it important for me to do this?
1. What do you call your problem? 2. What has caused it? 3. Why do you think it started when it did? 4. What does it do to you? 5. How severe is it? 6. What do you fear most about it? 7. What are the chief problems it has caused you? 8. What kind of treatment do you think you should receive? 9. What do you hope for in the future? 10. What would be a good outcome for you?
Inquiry about advance care planning documents is built into the system The advance care directive has a specific place in the healthcare record There are triggers to inquire about the directive
Needs to start in chronic disease management and recur regularly in all health care settings The moving in assessment needs to include resident and SDM understanding of the medical situation and what the future holds
All family conferences should be viewed and used as an opportunity to educate the resident and SDM on: The current medical situation What the future will be like What kind of decisions may have to be made in the future