Palliative Care

1 What are the elements of palliative care that are important in the care of critically ill patients?

Palliative care is support provided by an interdisciplinary team that focuses on relief of suffering in the physical, emotional, and spiritual domains of health. In the intensive care unit (ICU), coincident with aggressive disease-directed therapies, a multidisciplinary team provides this support to patients and families as they face what can be an emotional and tumultuous journey. This care is provided by physicians, nurses, social workers, and chaplains.

Specific elements of palliative care in the ICU:

2 What are the goals of the ICU family conference?

3 What are the steps of a family meeting?

Preparation

Invite invested participants; plan agenda, time, and space.

Premeeting

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.

Information

Provide medical information about condition, prognosis, and treatment options.

Explain aspects of surrogate decision making.

Exploration

Elicit questions, concerns, and values, and explore how these influence decisions.

Recommendation

Provide medical guidance and recommendations based on stated goals and values and the clinician’s professional knowledge and experience.

Summary

Review medical plan, next steps, and follow-up.

Document.

4 What components of the family meeting are associated with better outcomes?

Research has 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 Box 85-1.

Box 85-1 Important components of intensive care unit family conference

Hold family meeting within 72 hours of ICU admission.

Listen more, speak less.

A higher proportion of time providers spend listening to families rather than speaking is associated with increased family satisfaction with the meeting.

Make empathetic statements acknowledging the difficulty of:

Having an ill loved one

Surrogate decision making

Impending loss of loved one

Make statements of nonabandonment and support for the decisions made.

Explore patient values and treatment preferences.

Explain principle 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 134:835–843, 2008.

5 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:

6 What is empathetic communication?

There are two elements of communication: one involves primarily sharing cognitive or informational content, and the other involves statements that refer or respond to emotional states. Expressing clinical empathy is an essential part of therapeutic communication and has been shown to strengthen the physician-patient relationship, improve patient satisfaction, and enhance treatment adherence. For example:

The NURSE mnemonic can be used to express clinical empathy:

Name the emotion

A lot of people in your situation would feel angry.

It sounds like this has been frustrating.

Understand

I can’t begin to understand how hard this is.

It is hard to be in a situation like this.

It sounds like you are weighing wanting to be sure everything that can help has been tried against wanting to be sure that if she is at the end of her life she does not suffer.

Respect

We have a lot of respect for how you are so present and supportive of your loved one.

I can tell you have been taking very good care of your mother.

Support

You will not be going through this alone; we are here to help you.

Based on what you have told us, we think you are making the right decision for your loved one.

Explore

What is the most difficult part of this for you?

Can you help me understand…?

7 What is a goals-of-care discussion?

The patient or surrogate decision maker and the medical team need to have a shared understanding of the patient’s goals of medical therapy. This involves the physician providing 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. Goals are fluid and can change on the basis of the medical condition and prognosis. Initial ICU goals of care have a curative or restorative intent. As survival becomes unlikely goals may transition to comfort and allowing a peaceful death. It is essential to establish the goals of treatment before discussing new treatment options.

8 What are the steps in a goals-of-care discussion?

Elicit patient and family understanding of the illness and prognosis.

Provide information about prognosis and likely outcomes, including best case scenarios and worst possibilities.

Explore what constitutes quality of life, what is most important to the patient.

Explore what one is hoping for.

Explore situations or outcomes that would not be desired or acceptable.

Summarize values and goals, and advise on a medical plan to best achieve these goals:

I hear you say these are your values and goals, … these elements of quality of life are important to you, … this is what you are hoping for, … and these are the situations where quality of life would not be acceptable. Based on this, the medical plan I think would best achieve these goals is. …

9 What questions can be asked of a surrogate decision maker to help elicit patient values and goals?

10 How can dying and end-of-life planning be discussed?

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.

When prognosis is ambiguous but concerning:

If despite our best efforts Jane’s illness continues to worsen, I am concerned that her life may come to an end. While we hope and work for the best, we should also have a plan in place to provide the best care possible if she is at the end of her life.

Unfortunately we do know that at some point your life will come to an end from this illness. As hard as it is to discuss, putting a plan in place for the care that you want at the end of your life is very important for both you and your family. It is part of getting your affairs in order so if you are unable to speak for yourself at the end of your life, your family can feel comfortable that they know your wishes.

When further disease-directed therapies are not helpful and death is expected:

I wish we had better treatments for your condition. …

Although it is not in our control that your life will come to an end from this illness, what we do have control over is what happens between now and then.

Although we can’t control the disease, we can treat the symptoms of the disease and help you feel as comfortable as possible with the time that you have. And when you are at the end of your life, we can assure that you pass peacefully, comfortably, and on your own terms.

11 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.

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.

12 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).

13 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.

The FICA tool has been shown to be an effective and feasible framework for a clinical spiritual assessment:

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 health care 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 health care providers to use this understanding of your beliefs as they care for you?

14 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 (see Box 85-2). 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.

15 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.