END-OF-LIFE CARE: Module 4

END-OF-LIFE CARE:Module 4 • Making Difficult Decisions Module #4

Vignette #1 • It is the first day of the month and you have just started attending on the general medicine wards. The team admits a 65 year old woman, Mrs. G, with a new pathologic fracture of her hip. She has a history of breast cancer metastatic to her bones and liver. Several months ago, the last time you were attending, she was admitted with bilateral ureteral obstruction and was treated with bilateral nephrostomies. The house staff tell you that she does not want any surgery, radiation, or chemotherapy, yet she ultimately wants to return home and wants to be “full code.” The resident wonders if you could help “establish a code status” for her. Module #4

Vignette #2 • J.W. is a retired veterinarian who has had amyotrophic lateral sclerosis for 2 1/2 years. He was a collegiate wrestler and has always been athletic. He is married with two grown children and several grandchildren. He has had a rapidly progressive course; currently, he is able to breathe, feed himself, swallow, and propel himself in a motorized wheelchair. Otherwise, he is completely dependent on his wife for his ADLs. He has decided that he does not wish to be on a ventilator or have a feeding tube. Once he reaches the stage where he is “totally paralyzed” and can’t swallow, he would like a physician-assisted suicide. He comes to you, his primary care doctor, wanting to find out what you can do for him when that time comes. Module #4

Learning Objectives • Apply a tool for assessing preferences and moving towards decisions • Identify arguments for and against hastening death • Increase your skills in responding to requests to hasten death • Incorporate this content into your clinical teaching Module #4

Outline of Module • Difficult decisions at the EOL • Preferences and decision making • A systematic approach for reaching informed decisions • Break • Requests to hasten death • Pros and cons of the debate • Strategies for responding to requests to hasten death Module #4

Brainstorm • When a person is dying, what are some of the most difficult decisions that come up? Module #4

Discussion • What makes these decisions particularly difficult for you? Module #4

Summary • There is a lot here: • Frustrating situations • Strong feelings that we don’t often have a chance to acknowledge • A lot going on for the provider as well as the patient and family Module #4

It is GOOD to Discuss Preferences • Goals • Options • Opinions • Documentation Module #4

Goals of Care • Identify the stakeholders • Ascertain stakeholders’ cognitive understanding • Assess stakeholders’ values • Elicit ‘big picture’ goals first Module #4

What you might say... • “What is your understanding of…(your current condition, your illness, why you are here)?” • “What have you been told about your condition/illness?” • “What have your doctors told you?” Module #4

Brainstorm • When you get to know the person better and find out about their values, what issues tend to emerge? • What kinds of things are important to your patients, what kinds of values do you learn about? Module #4

Some Questions to Elicit Values • “What are your overall goals of care?” • “I’m trying to understand how you see the big picture. We’ll get to the specifics in a moment. Do you have a major goal in your care? What is most important to you?” • “If you think about getting very sick, what worries you the most?” • “Some people want to be kept alive as long as possible at any cost, some focus on being as comfortable as possible, and other people want only modest life-prolonging interventions.” Module #4

Internally Clarify Your Own Goals Module #4

Options • Identify available options • Present benefits and burdens • Present probability Module #4

Present Benefits and Burdens • Do your homework • Know the basic facts before discussing difficult decisions with the patient/family • Benefits and burdens only make sense relative to goals • Present the ‘gray zone’ of decision-making, not just extremely positive or negative scenarios Module #4

Discussion • What other examples can you think of, where clinicians need more data? • How do you respond when you don’t know the answer? Module #4

Present Probability • For many decisions the probability of a particular outcome is important • Avoid exclusive use of qualitative terms • Use percentages when possible • Try to frame them in both ways Module #4

Discuss Probabilities • “Would numbers be useful to you here? Remember, statistics are based on a population, and you are an individual…” • “The chance of someone like you surviving CPR is…%, the chance of not surviving is…%” • “The chance of survival with significant brain damage would be…%” Module #4

Opinions • Incorporate patient/family preferences for specific options • Offer your opinion • Separate data from opinion • Provide a basis for your opinion • Consider carefully what you are willing to do (an option) and not willing to do (bottom line) • Use neutral language Module #4

What You Might Say... • “Given what I know about you, it seems to me you would probably do best with..." • “Based on what you said earlier about wanting to die peacefully, I would recommend…” • “In my opinion, you would be best served by…” Module #4

Summarize and Verify the Decision • “Now let me make sure that we all understand this decision clearly.” • “What I heard you say was…” • “We’ve covered a lot of ground - tell me in your own words the understanding we’ve come to.” Module #4

Documentation • Record the essence of the discussion and who participated • Current and future preferences • It is not enough just to write ‘DNR’ or ‘Full Code’ Module #4

What You Might Write... • “I discussed possible tube feeding with the patient and his daughter. Possible benefits and burdens identified. Patient said he’d never want food poured into him if he couldn’t eat. I recommended against tube feeding at this time, and patient and daughter agreed.” • “At this time the patient says he would like to return home under the care of his wife and the hospice team. If his care proves burdensome to his wife or if he should require acute symptom management, then they request that he be transferred to the inpatient hospice unit.” • “Patient elects full code for now; if deemed terminally ill or unable to relate meaningfully with the environment without reasonable chance of recovery, then she would elect to change to comfort care.” • “Patient (or surrogate) requests DNR status.” Module #4

Role Play • Assess patient preferences: Take the GOOD Steps • Goals of Care • Options • Opinions • Documentation Module #4

Debrief Module #4

Dealing with Conflict • Focus on shared goals • Keep communications open • Use time as an ally Module #4

Summary • Discussing patient preferences is not always easy, but you can significantly improve the skills needed for this task. Module #4

Difficult Decisions Regarding Requests for Hastening Death • The case has developed into the complexities of a request for physician-assisted suicide… Module #4

What is Physician-Assisted Suicide (PAS)? • Physician provides the means to hasten death, which the patient uses • Legal under certain circumstances in Oregon • PAS is not euthanasia • Euthanasia = direct administration of a medication by the physician or nurse with the intent of ending life • Euthanasia is illegal everywhere Module #4

Brainstorm • Setting aside your own personal beliefs, why do you think patients would consider hastening their own death? Module #4

Arguments For and Against PAS Module #4

Discussion • How might some of these arguments apply in Mr. Smith’s case, both in favor of, and against, providing him with the means to end his life? • Try to see both sides, for the purpose of this learning experience Module #4

Summary • There is real diversity and heterogeneity of opinion among people you respect, including your: • Colleagues • Patients • Families Module #4

Strategies for Response to Requests to Hasten Death • Reaction • Assessment • GOOD • Additional resources Module #4

Reaction • Avoid a communication cut-off • Don’t over-react or under-react • Express empathy with the situation • Understand that the request does not require an immediate yes/no response Module #4

Assessment • Depression • Pain • Serious misunderstandings • Unmet needs • Correctable social situations Module #4

Adapt the GOOD steps: Goals • Explore what’s going on • “Help me understand why you’re making this request” • “Why are you thinking about this issue?” • “Is there something that you fear?” • “What is your goal in wanting to hasten death?” • Who would be affected by this? Module #4

Options • Explore what is available to address underlying issues • Explore other options and consequences • Elicit support • Arrange follow-up visits (this is key) Module #4

Opinions • Bottom line statement • Elicit stakeholders’ opinions • Express your opinion/position • “I will do everything possible to treat your pain.” • “I believe I could keep you pain free.” • “When the time comes, I’ll help keep you comfortable.” • Negotiate conflict Module #4

Additional Resources • Psychiatrist • Psychologist • Chaplain • Pastoral care • Community leader • Social worker • Patient’s support system • Ethics Committee member Module #4

Conclusion • The biggest mistake is not to think about these issues • You will be asked the question • Whatever your bottom line, this request calls for an empathic response Module #4

Learning Objectives Learning Objectives • Apply a tool for assessing preferences and moving towards decisions • Identify arguments for and against hastening death • Increase your skills in responding to requests to hasten death • Incorporate this content into your clinical teaching Module #4

END-OF-LIFE CARE: Module 4