Caitlin Baran and Prema R. Menon
CHAPTER 5
1. What is palliative care?
Palliative care is support provided by an interdisciplinary team that focuses on relief of suffering in the physical, emotional, and spiritual domains of health.
2. Name the elements of palliative care that are important in the care of critically ill patients.
• Communication skills
• Decisional support
• Prognostication
• Symptom management
• Psychosocial and spiritual support
• Decisions to withhold or withdraw
• End-of-life care
3. How can palliative care be utilized in the intensive care unit (ICU)?
There are two main models for ICU-palliative care integration: The consultative model focuses on increasing the involvement and effectiveness of palliative care consultants in the care of ICU patients and their families, particularly those patients with highest risk of death or morbidity. The integrative model embeds palliative care principles and interventions into daily practice by the ICU team for all patients and family members dealing with critical illness.
4. Describe the shared decision-making paradigm.
The key to the shared decision-making (SDM) paradigm is communication. Both parties share information: the clinician offers options and describes their risks and benefits, and the patient/
surrogate expresses their preferences and values. Each participant is armed with a better understanding of the relevant factors and shares responsibility in the decision about how to proceed.
5. What is a goals-of-care discussion?
The discussion begins with the patient or surrogate decision maker and the medical team having a shared understanding of the patient’s goals of medical therapy. The physician must then also provide a medical prognosis and possible outcomes. With this information, the patient or surrogate can provide information on his or her treatment preferences. The patient values can then be the primary driver of the goals of medical care, weighing burdens of treatments with likelihood of positive benefits or outcomes to make a care plan. Goals are fluid and can change on the basis of the medical condition and prognosis. It is essential to establish the goals of treatment before discussing new treatment options.
6. What are the goals of the ICU family conference?
• Begin to understand the patient’s values.
• Gain an understanding of the patient’s previous functional status.
• Exchange medical information between the patient, family, and the medical team.
• Engage in complicated medical decision-making.
• Make medical recommendations based upon the patient’s values, acceptable states of health, and their current medical situation.
• Provide emotional support to families.
7. How can we improve communication around goals of care?
Effective strategies to improve decision-making about goals of care are clustered around five themes:
patient and family factors, communication between healthcare providers and patients, inter- professional collaboration, education, and resources. Identifying patient and family factors that might inhibit SDM and ensuring communication, collaboration, education, and resources are key steps to improving communication.
8. What are the steps of a family meeting?
• Pre-meeting
• Invite family members and care team members. Arrange a time and location.
• Discuss among team members to reach consensus on goals of the meeting, medical condition, prognosis, and treatment options.
• Introductions
• Identify family, team members, roles, and goals of the meeting.
• Perceptions
• Ask family members what they hope to have addressed in the meeting.
• Ask what the family members know about the illness and what they expect or hope for.
• Explain
• Provide medical information about condition, prognosis, and treatment options, as well as best and worst-case scenario.
• Explain aspects of surrogate decision-making.
• Exploration
• Elicit questions, concerns, and the patient’s values, and explore how these influence decisions.
• Empathize
• Recognize the difficult time a family is passing through.
• Recommendation
• Provide medical guidance based on stated goals and values and the clinician’s professional knowledge and experience.
• Summary
• Review goals, medical plan, next steps, and follow-up.
9. What questions can be asked of a surrogate decision maker to help elicit patient values and goals?
• Help me understand how things were for your father before he got this sick. What did he enjoy doing? What things are most important to the quality of his life? Is there an outcome or quality of life that would not be acceptable to him?
• If your loved one were here listening to this conversation, what would she be thinking or saying?
• Did your loved one ever talk about his wishes if he were to get sicker and were nearing the end of his life?
10. Are there components of the family meeting associated with better outcomes?
Yes. Studies have identified specific elements of family meetings that are associated with increased quality of care, decreased negative psychological symptoms during bereavement, and improved family satisfaction with communication. See Table 5.1.
11. What communication tool has been shown to be beneficial in improving communication in the ICU family meeting?
Incorporating the VALUE mnemonic has been shown to significantly reduce family symptoms of anxiety, posttraumatic stress disorder, and depression measured 3 months after the patient’s death:
• Value what the family says.
• “As I listen to you, it sounds like the most important things are x, y, etc.”
Table 5-1. Components of Family Meetings Associated with Better Outcomes Family meeting within 72 h of ICU admission
Healthcare providers listen more, speak less Make empathic statements
Make statements of non-abandonment and support for decision-making Explore patient values and treatment preferences
Explaining principles of surrogate decision-making Reassure that the patient will be comfortable and not suffer
Modified from Curtis J, White D. Practical guidance for evidence-based ICU family conferences. Chest.
2008;134:835-843.
ETHICS AND PALLIATIVE CARE 37
• Acknowledge expressed emotions.
• “I can see you are concerned about x.” “It’s hard to deal with all this.”
• Listen.
• Understand the patient as a person.
• “What brings John joy?”
• Elicit family questions.
• “What other questions can I answer for you?” “Does what we have talked about make sense so far?”
12. What tools can be used to defuse conflicts?
• Notice the conflict
• Recognize any of the irritation, anger, or disconnect you might feel.
• Find a non-judgmental starting point
• Recognize what the real topic is, rather than the emotions around it. “I feel like we are talking about the medical options from here” or “I sense we are talking about how hard it is to be in this situation.”
• Listen to their story first
• Identify what the conflict is about and recognize it as a shared interest
• “I think we are all interested in ensuring that we do right by [the patient].”
• Brainstorm options
• “Would it be okay to talk about the options and pros and cons of each?”
• Seek an option the recognizes interests of all parties
• “Perhaps we could consider continuing on this path and monitoring for x over the next x hours/
days and using this to understand if we are moving in the right direction.”
• Recognize some conflicts cannot be resolved
13. Do palliative care interventions improve outcomes in the ICU?
Although improved communication in the ICU has shown to lessen the burden of bereavement and may reduce length of stay and costs, there are no data to support early palliative care involvement in the ICU improves mortality or satisfaction with care. There has been no evidence of harm from any intervention.
14. What is the role of the social worker in the ICU?
Social workers play a critical role in supporting patients and families in the ICU by providing communication, counseling, and assisting with practical needs. When coordinating a family meeting, they can help families anticipate what will be discussed, help clarify their questions for the medical team, and provide emotional support during and after the meeting.
15. What if clinicians disagree with the patient or surrogate?
After additional clarification of values, goals, prognosis, and treatment options, both parties can try to persuade the other and/or seek common ground. A time-limited trial of continued therapy, followed by reassessment, may bring about resolution. Consider additional supportive services from second-opinion consultations, social services, chaplaincy, ethics consultation, psychiatry, and/or palliative care.
16. What if there is no surrogate decision maker for the patient?
Gather as much information as possible about the person to best understand the patient’s story, lifestyle, functional status, and values. Consider contacting neighbors, work colleagues, clergy, community members, primary care providers, and other outside healthcare providers. Use the information gained to approximate a substituted judgment to supplement the “best interests”
standard to make decisions. Ethics consultation and advice from hospital legal counsel may be required to complement the plans devised by the attending physician and ICU team.
17. How can dying and end-of-life planning be discussed when prognosis is ambiguous but concerning?
When recovery is not possible, it can be hard to find the words to convey this in a clear, supportive, and empathetic manner. This involves delivering bad news and reframing hope for what goals can be accomplished. Experts recommend truthful prognostic disclosure, emotional support, tailoring the disclosure strategy to each family’s needs, and checking for understanding. In addition, stakeholders (patient, healthcare workers, and other communication experts) suggest showing families radiographic images (to help them “see” the prognosis themselves), not using numeric estimates to convey prognosis, and considering prognostic communication to be an iterative process that is mentioned even early in an ICU stay as a potential outcome.
18. How should the clinician discuss stopping or withholding life-supporting treatments when recovery is not possible?
When goals transition to providing comfort at end of life and the decision is made to stop life-prolonging treatments, family members can feel burdened that decisions they make are the cause of death. They also may worry that stopping or withholding treatments may cause suffering. It is important for providers to be clear that it is the underlying disease that causes death. Clinicians must be ready to provide support for the decisions made and take time to explain in detail how comfort is assessed and maintained.
Although we can’t control the disease, we can treat the symptoms of the disease and help Jane feel as comfortable as possible with the time she has left. And when she is at the end of her life, we can assure that she will pass peacefully, comfortably, and on her own terms.
19. Give an example of how you would describe the process of stopping or withholding life-supporting treatments to family members/loved ones.
Unfortunately we have reached the point where John cannot recover, and his life is coming to an end no matter what decisions we make today. Would it be helpful for you to know how we would care for John if the goals of his medical care shifted to focus on comfort and allowing a peaceful death? That would mean that we would aggressively treat pain, anxiety, and shortness of breath with medications like morphine, that once we were sure he was comfortable we would remove the breathing machine, and that we would allow his life to come to an end from his lung disease as peacefully as possible.
20. What is spirituality?
The 2009 Consensus Conference on Quality of Spiritual Care defined spirituality as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” (p. 887) 21. Why is understanding and discussing spirituality important in the ICU?
Family members and clinicians consider spirituality an important dimension of end-of-life care.
Supporting the expression of various forms of spirituality during the dying process in the ICU can improve the overall experience with death and dying.
22. How should the clinician discuss spiritual and religious issues?
Spiritual support is a fundamental pillar of palliative care. Most patients want their physicians to ask about their religious and spiritual beliefs, though many practitioners feel uncomfortable doing so.
Some patients and families may base their preferences for starting or stopping treatment on their religious or spiritual beliefs.
23. What tool has been shown to be an effective and feasible framework for a clinical spiritual assessment?
FICA is as follows.
• Faith, belief, meaning
• Is spirituality, faith, or religion an important part of your life?
• Do you have spiritual beliefs that help you cope with stress?
• What gives your life meaning?
• Importance and influence
• What role do your beliefs play in your healthcare decisions?
• Community
• Are you part of a religious or spiritual community?
• Is this helpful to you and how?
• Address in care
• How would you like your healthcare providers to use this understanding of your beliefs as they care for you?
24. What are indicators of spiritual or existential distress?
When facing a life-threatening illness, individuals can experience great distress in psychological, spiritual, and existential domains. Indicators of existential or spiritual suffering include statements of meaninglessness, hopelessness, and guilt. Helpful responses to spiritual or existential distress are statements that acknowledge the pain, provide a nonjudgmental supportive presence, and bear witness to the patient and family. Hospital chaplains are specially trained to provide this type of therapeutic support irrespective of specific faith or belief system of the patient or family member.
25. What is clinical futility?
American Thoracic Society (ATS)/American Association of Critical-Care Nurses (AACN)/American College of Chest Physicians (ACCP)/European Society of Intensive Care Medicine (ESICM)/Society of Critical Care
ETHICS AND PALLIATIVE CARE 39 Medicine (SCCM) issued a recent consensus statement recommending the use of the term “potentially inappropriate” rather than “futile” to describe treatments that clinicians believe have some chance of accomplishing what the patient/surrogate wants but the clinicians believe that competing ethical considerations do not justify providing them. The reasons for this are twofold: First, the word
“inappropriate” conveys more clearly than “futile” or “ineffective” that the assertion made by clinicians is based on technical medical expertise and a value-laden claim, not just a technical judgment. Second, the word “potentially” signals the judgments that are preliminary and require review before being acted on.
26. How do you approach a conflict regarding “potentially inappropriate” treatments?
The consensus statement recommends the following approach to manage such cases:
• Enlist expert consultation to continue negotiation during the conflict resolution process
• Give notice of the process to surrogates
• Obtain a second medical opinion
• Obtain review by an interdisciplinary hospital committee
• Offer surrogates the opportunity to transfer the patient to an alternate institution
• Inform surrogates of the opportunity to pursue extramural appeal
• Implement the decision of the resolution process
27. How do you manage conflict during time-pressured situations (i.e., urgency of clinical scenario does not allow for above resolution process to occur)?
In situations like this, a temporizing treatment plan should be initiated and should not include the requested treatment. Before refusing the treatment, (1) pause to evaluate facts and moral blind spots (Table 5.2), and (2) try to engage other clinicians to ensure consensus. Finally, explain to the surrogates the reasons for refusing to administer the requested treatment. Remember to (1) base judgments on best understanding of professional obligations, (2) have a high degree of certainty that the treatment requested is outside the boundaries of practice, and (3) only enact this strategy if you cannot carry out the entire resolution process above.
28. How prevalent is conflict in ICUs and what causes conflict?
Over 70% of ICU workers report perceived conflicts with over 50% considered as “severe” yet preventable with improved communication. The most common sources of conflict were lack of psychological support (in end-of-life care), absence of staff meeting, and problems with the decision-making process. Factors associated with conflicts include: working more than 40 hours/week, more than 15 ICU beds, caring for dying patients, perception of symptom control, and no routine unit-level meetings.
29. List means to lessen or resolve moral distress and intra-team or team-family conflicts.
Proactive family meetings, open visitation, family presence on rounds, respect of cultural norms, routine unit-level meetings, staff debriefings, collaborative care, spiritual support, relieving patients’ distressing symptoms, ethics consultation, and integration of palliative care principles and practices into the ICU.
30. How can an ethics consultation help in the ICU? Ethics consultations can:
• Clarify areas that need elucidation
• Identify and name the ethical issues
• Help discern a good process for arriving at decisions
• Identify relative guidance from policy, literature, and/or case precedent
• Help formulate justifications for courses of action
• Help caregivers address moral distress
Table 5-2. Questions to Assist in Understanding Moral Issues in Time-Sensitive Situations
Am I certain this treatment is OUTSIDE of the boundaries of accepted practice?
Am I willing to have my decision-making rationale publicly reviewed in a court?
What are the consequences to the patient, family member/surrogate, team, and institution?
Am I sure that my decision is based on the clinical situations alone (i.e., not related to sex, race, ability to pay, etc.)?
Modified from Bosslet GT, Pope TM, Rubenfeld GD, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in ICUs. Am J Respir Crit Care Med. 2015;191(11):1318-1330.
31. Have ethics interventions been shown to reduce ICU length of stay or improve other ICU quality indicators?
Yes. A large multicenter randomized controlled trial of ethics consultation in the ICU showed mitigation of treatment conflicts and, for non-survivors, reduced ICU length of stay by 1.44 days, days of ventilator use by 1.7 days, hospital length of stay by 2.95 days, and costs (range of savings: $3000–$40,000).
These reductions were achieved without altering mortality between the intervention and control groups.
32. What is the difference between acceptable end-of-life care in the ICU and active euthanasia?
Good end-of-life care in an ICU involves focusing on comfort (physical, psychosocial, and spiritual) while withholding or withdrawing life sustaining therapies (LST) from a patient. The focus is on achieving relief of distressing symptoms and on foregoing burdensome therapies.
On the other hand, the goal of active euthanasia is the death of the patient. Practitioners of active euthanasia usually also intend the comfort of the patient, but one of the means they use to achieve that goal is by killing the patient. Many persons note an ethical difference between “letting die” and “killing.”
33. Why is the administration of narcotics and sedatives during the terminal withdrawal of LSTs not considered active euthanasia?
It is not considered active euthanasia when doses are titrated “to effect,” with the intent being the relief of particular distressing symptoms. The foreseen but unintended consequences of lowering blood pressure or slowing respirations are ethically acceptable if it is clear, from the titrating of doses, that the intention is palliation. Such dosing is justifiable under the “doctrine of double effect.” One multicenter study found that palliative sedation did not shorten life when used to relieve refractory symptoms in dying patients. However, when doses are given with the intent to cause death, it is considered active euthanasia.
34. My patient has a “Do Not Attempt Resuscitation (DNR)” status, yet needs surgery. Do we need to make him or her “full code” for the operating room?
No or maybe. It depends on what the patient’s goals of care are, what he or she hopes to achieve from the surgery, and what the patient has delineated as unacceptable outcomes. Although a patient’s severity of illness may be the reason a patient is not considered for a surgical intervention, it is unethical to deem a person unable to receive surgery or procedures due to their DNR status alone.
Thus a thorough discussion must occur before the surgery in the context of discussing the expected benefits and risks of the procedure in light of the patient’s condition, values, hopes, fears, and reasonable goals.
ACKNOWLEDGMENT
The authors wish to acknowledge Drs. Alexandra F.M. Cist, MD, Ursula McVeigh, MD, and Allan Ramsay, MD, for the valuable contributions to the previous edition of this chapter.
1. Palliative care focuses on the relief of suffering of patients and helps to relieve surrogate and healthcare provider burden.
2. The foundation of quality end-of-life care in the ICU is early, high-quality, and iterative communication.
3. Structured and thoughtful family meetings help ensure a continued shared-decision making process throughout an ICU stay.
4. Ethics consultations help relieve moral distress and intra-team and team-family conflict.
5. Doctrine of double effect is when the foreseen but unintended consequences of potential death are ethically acceptable if it is clear that the intent of utilizing sedative/analgesic medication is palliation of symptoms.
KEY POINTS: ETHICS AND PALLIATIVE CARE
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