Sunday, May 22, 2011

Communicating With Patients And Families About Difficult End of Life Decisions

Introduction: Several years ago a Social Worker and I put together a teaching module for hospital teams to use when discussing difficult decisions with patients and caregivers. We tried to model the discussion around shared decision making and making explicit the ethical principles at play.

Common oversights, mistakes, or systems issues:
- Avoidance by physicians. Issues painful and hard to discuss
- Conversely, too many of the staff asking patient about “code status”
- Wait for patient to bring up issue
- Wait for a crisis, deferring the discussion to another provider
- Focusing on “code” issues rather than broad picture of patient desires & options
- Trying to accomplish too much in a short period of time
- Not giving a clear picture of options with your recommendation to the patient
- Inadequate documentation and communication with all the stakeholders
- Inadequate systems support for the patients, families and providers

Our Methodology For A Patient Care Conference
(Deliberation About Difficult Care Decisions)

1. Beginnings
Case Selection. In addition to the attending physician, a number of people can help initiate a conference. Nurses and social workers, in communicating with patients and families, often help to identify the issues and determine the need. There are several situations where conferences have proved particularly useful: e.g. withholding or withdrawing a treatment, particularly where there is a struggle or disagreement with how to proceed; intensity of future treatments; code status; and PEG tube placement. There may be communication, cultural, and language issues that can be best addressed by convening everyone involved.

Conference attendees and location. Arrange a meeting with all the stakeholders available. These may include the patient, family, physicians, nurses, other providers (e.g., respiratory therapists), social worker, pastor, etc. Consider a conference phone for relatives not present. If a stakeholder is excluded, they may feel alienated and become obstructive to decision making. Social workers actively participate in the discussion and help to keep it focused. Meet in a quiet, private, comfortable area. An experienced attending physician, nurse, or social worker should be chairperson and lead the group through the case conference method. Successful leadership requires mentoring and experience and should not be left to a junior or inexperienced person. Attending physicians must reach a consensus about the medical prognosis before the meeting begins.

2. A moral community
Explain the general use of this discussion method. All present introduce themselves and explain their role in the care of the patient. Decide prior to the meeting who is to keep notes and how—by hand, flip chart, etc. The chair then outlines the use and importance of a structured format for the discussion and introduces the concept of a moral community.

An opening statement sets the tone with values and objectives for the meeting. If the patient is absent, recognize the fact and point all discussion toward the patient, what he/she
would want, and share the difficulties of knowing. State that good will is assumed, that all input is welcome and all perspectives are valued, and that confidentiality is expected. Warmth and caring must be communicated. Setting the tone in this way allows the group to begin forming common values and goals for the discussion. The group also realizes that there are not always clear “right or wrong” answers, that values may conflict, and that disagreement about values is quite permissible.

3. Medical information
The attending physician gives a discussion of the patient’s medical status in lay terms, presenting such information as x-rays, laboratory data, and a time line of the illness. The time line should include previous outpatient contacts, if any, and the course of the patient’s care up to the present. This process allows families to view the patient’s medical status as a structured progression rather than a series of isolated events. Allow time for questions and clarification of factual information.

4. Patient preference
Focus next on the patient as a whole person: life, activities, interests, attitudes, etc. Who can speak on the patient’s behalf? Discuss the advance directive and durable power of attorney, if available. Talk more about practical aspects of daily life than abstract ideas about “quality of life.” Elicit input from all present, and acknowledge those stakeholders who may be absent.

5. Medical prognosis
The attending physician should give a medical prognosis and be as informative as possible, referring to tangible experience and the medical literature. It is often useful for physicians to discuss their personal experiences with similar patients. Discussing other cases and their outcomes helps the family recognize that their situation may not be unique, and that the providers are familiar and experienced with clinical problem in question.

6. Feelings
Review the discussion up to this point and identify the feelings of the loved ones and providers. Where are they in their thinking (e.g., focused on patient’s desires)? What is the “ideal picture” that all would hope for? This important step gives the participants a chance to voice their wishes (at times wildly unrealistic), and allows for tears and expressions of frustration or caring. It recognizes that the conference is not a mechanistic exercise but an emotionally charged, highly personal interaction. The leader can simply say, “How are you doing?” or “Do you have feelings about this?” Eliciting and acknowledging these issues extends support to those who have difficulty offering their perceptions and feelings to the group.

7. Options for treatment/withdrawal/care for comfort
Discuss all the options that could be carried out. Give the pros and cons (benefits/burdens) of each option and ask the group to consider which option the patient would prefer and why (make the reasoning explicit). This is the time to discuss legal “what ifs”; if introduced earlier in the conference, they tend to sidetrack and dominate thinking. Don’t focus only on CPR, but list all the therapies, both helpful and potentially harmful. Allow all stakeholders to contribute. The attending nurse can outline methods of non-invasive care, e.g., personal care for comfort, sedatives, morphine. etc., that can provide relief from possible pain and suffering.

8. Leadership
The attending physician has a special duty to give a clear recommendation for one of the options discussed in a “caringly direct” manner. This recommendation should, of course, be based on data, experience, and, most importantly, knowledge of the patient’s wishes. If the physician avoids the leadership role and declines to make a recommendation—effectively placing the entire burden of choice on the patient or family—the unfamiliarity, fear, and guilt may place decision making on indefinite hold. This may create unnecessary delays, confusion, and suffering. The physician should also discuss why he/she is recommending against the other options.

9. Consensus and Support
Reach as great a consensus as possible. Summarize the meeting and schedule the next step (e.g., reconvene the next day, remove the ventilator, modify the code status, etc.). Often the patient or family need some time to process various options. Nurses and social workers at the conference have a continuing role in helping the patient and family work through the issues raised at the conference. Conclude the meeting by going around and asking those present for closing thoughts. An informal consultation with an ethics committee member can be very useful if the meeting ends in an impasse. Occasionally, a formal ethics committee review can be requested for further deliberation (but not to referee an impasse).

In general, the nurse provides the most continuity for family and patient support in the care process. If withdrawing life support, the attending nurse, social worker, and physician should discuss how to manage the care of patient and survivors alike. Monitoring equipment and intrusive tubes can often be removed. The attending physician should be present, particularly when withdrawal likely means imminent death. The social worker may be involved with family/survivor support. The family, pastor, or others may be present, as the patient would desire, at death.

10. Follow through
The attending physician, nurse, or social worker makes some type of contact with the loved ones after death. Some providers attend funerals as a closure with the family, or, if they were particularly close to the patient and family, speak at memorials. Many physicians phone the spouse or loved one a few days after death, or at least send a note of condolence. This allows lingering questions to be answered, and human caring to be expressed beyond the medical/technical environment.

Comment: I'm sure many providers have developed their own effective style of reaching difficult decisions with patients and families. Our above approach is suggested as an outline to help keep the discussion moving forward in a caring manner which allows all parties to participate in shared decision making.


  1. Excellent post, thanks for sharing. While I agree that the family benefits from clinical leadership re. recommending a course of action, some physicians have difficulty doing this. This can be mitigated when physicians discuss their recommendations with experienced hospice professionals prior to a family meeting.

  2. great post really like it however this part i want to query ase Selection. In addition to the attending physician, a number of people can help initiate a conference....exactly how many people is a "number of people"? Designer Baby Clothes

  3. Excellent point about consulting hospice. This can and should be done when the family is ready to explore palliative care. Sometimes the family and medical team need more time to explore further treatment options before making the sometimes wrenching switch from "curative mode" to acceptance that they have run out of curative options and that it's time to switch to hospice for the truly remarkable care methods they offer.

    In terms of who can initiate a conference, I usually found that the nurses were most aware of the family's needs for more discussion. But the doc, social worker, or family member are the other ones who can initiate things. I view the family conference in the ICU basically like a "mini Ethics Committee" which can address the concerns of all the players involved in the care of the patient.

  4. I am learning soft skills to improve my communication. I know it is difficult to build rome in one day.