Plan

Recent systematic review found average prevalence of decision-making incapacity: 34% in  medical setting, 48% in psychiatric setting

Eliminate communication barriers that keep the patient/family from understanding the clinician: hearing, language

Assess medical knowledge of illness: engage patient/family in discussing their knowledge of potential consequences (benefits and risks) of each choice, including effects on function, longevity, and quality of life.

Ensure that the patient can explain how they came to their decision and the personal impact of that decision. Explore any discrepancies between stated values and the choice decided upon.

Make a capacity determination or seek further expertise (psychiatry, geriatrics, ethics)

Useful article with capacity assessment worksheet

https://www.aafp.org/pubs/afp/issues/2018/0701/p40.html

If patient assessed/found to lack capacity for healthcare decisions, another person given decision-making authority. SDM authority only when patient lacks capacity. Rules about who can be SDM, their responsibilities vary.

Ensure you know local rules and that SDM qualifies. Copy legal documents for medical records.

Include patient in decision-making to greatest extent possible.

Remind SDM as decision-maker: model goals, preferences, values and beliefs of the patient.

Avoid questions to SDM: “What do you want us to do? What is your decision?”

Explain medical situation and options for care. Ask SDM to reflect on what patient’s values and beliefs would be about options offered.

Helpful conversations that SDM had with patient can be useful to review. Understanding more about the personality/life lived of patient can be useful.

Keep SDM informed re clinical conditions, prognosis, new changes.

If concerns about SDM performance seek ethics consult, legal advice.

Here’s what the patient and family need to know.

1. How could the intervention affect:

• length of life
• ability to maintain/return to current health
• ability to think and function (i.e. cognitive impairment)

2. What is involved in the intervention:

• potential benefits
• potential complications
• potential burden/suffering

Based on the patient’s current medical situation, CPR may or may not be recommended.

To inform discussion with patient/family:

Survival to discharge from hospital for in-hospital cardiac arrest

• all conditions: 15-22%
• pre-existing major trauma: 3.9%
• pre-existing septicemia: 13.5%
• pre-existing early metastatic cancer: 13.5%
• pre-existing stroke: 4.1%
• pre-existing dialysis: 3.9%
• Of the patients discharged 28.1% had clinically significant neurological disability.

Typical goals of care:

• live longer or stay alive
• improve or maintain function, quality of life, independence
• be comfortable
• achieve life goals
• support family and loved ones

May be helpful to ask patient to identify which are the most important and why

Ask patient about specific life goals (e.g. live to daughter’s wedding, birth of grandchild)

Consider deprescribing depending on the answers to following questions for each medication:

TT – treatment target (symptoms, disease indices, prevention of events)

TTB – time to benefit from medication    LE – Life Expectancy     TTH – Time to Harm from medication

Life expectancy > Time to Benefit < Time to Harm (patients should live long enough to benefit from medication they take, if not, stop it)

TTB for:

Tight glycemic control  ~ 10 years.

Intensive blood pressure control (<120mmHg) for prevention of cardiovascular events 1-2 years with those >75 having shorter TTB

Statins 2-5 years for primary prevention, 16 months in stable CAD

ASA for prevention of vascular events: primary with no DM  >5 years, secondary prevention after acute MI/stroke 1 month, history of MI/Stroke 2-2.5 years

Bisphosponates for fractures in women ~ 12 months. (Not enough studies in men)

Symptom control medications TTB = 0 so do not stop.

Many patients will express a desire to die because of suffering, prognostic awareness, feeling a burden to others, readiness for the end to come. Do not assume that they are asking for hastened death. Take the time to explore and understand what they are experiencing and what they are communicating.

Assessment framework:

• Acknowledge the suffering/insight occurring to cause patient to speak of wanting to die
• Assess/address physical suffering
• Assess/address potential depression/anxiety/delirium
• Assess patient’s knowledge of the natural process of dying and potential fears
• Assess/address concerns about burden to others, loss of independence, meaning, dignity
• Ensure patient aware of right to refuse, stop, withdraw any therapy causing distress
• Address physical/psychological/spiritual suffering according to evidence-based therapies, using multi-professional team and community/family support. Spiritual care practitioner visits essential. See Existential Distress, Depression, Anxiety for assessment/management tips
• If persistent request by capable adult, free of coercion, with irremediable medical condition causing enduring intolerable suffering, in jurisdiction with legal physician-assisted death follow local guidelines.

Canadian Medical Association recognizes provision of assisted death in Canada distinct from practice of palliative care.

AboutGrief.ca on Canadian Virtual Hospice: practical, helpful information for everyone.

Bereavement period associated with increased risk of death/morbidity.

Severe anticipatory grief can predict post-death prolonged grief disorder (PGD).

PGD occurs in 10% of bereaved, can precipitate major depressive disorder (MDD).

PG-13 validated questionnaire for PGD.

PGD improves with counselling and cognitive behavioural therapy, need to distinguish from MDD.