How to Talk about End-of-Life Care and Dying with Your Patients: Part 1

August 1, 2014 at 12:14 am


Daisy Janssen, MD, PhD


Lynn Reinke, PhD

By Daisy Janssen, MD, PhD, and Lynn Reinke, PhD

For clinicians, finding the best moment to talk with their patients about dying is very difficult. Talking about dying is often postponed because clinicians assume that the patient is not ready, and they may be afraid to take away the patient’s hope. However, postponement carries real consequences. These include not addressing a patient’s specific concerns and leaving loved ones unprepared to make decisions during an acute event.

Although it is difficult, it is the responsibility of the clinician to create an open environment for talking about end-of-life care and dying and initiating the discussion with patients with a life-limiting disease.

In this two-part series, we will share advice that will help you initiate and sustain a meaningful conversation about end-of-life care and dying with your patients and their families so that you may provide the best care possible.

When to Begin the Discussion

The end-of-life-care discussion should begin when the patient is well enough to participate. Previous research has shown several milestones that serve to initiate the discussion:

  • The start of new or different treatments, e.g. initiation of oxygen therapy
  • Lack of additional treatment options.
  • The occurrence of limitations in activities.
  • Hospitalizations.

Once these milestones are identified, the clinician may then choose the appropriate time and place to broach the topic, determine who should be present, and hold a meeting with the patient and family.

Establish Goals of Care

Discussing the goals of care is an important component of advance care planning, and this starts with exploring what is important to your patient. Some patients feel that living as long as possible is most important, even if it means that they have to undergo highly burdensome interventions that impair their quality of life. Other patients may want to spend their remaining time at home with their loved ones without having to go to the hospital, even if this compromises their survival. The best possible care should support patients to live the rest of their lives according to their wishes.

Common questions to ask patients include:

  • “What are your biggest hopes?”
  • “What would help you carry on?”
  • “How do you like to spend your time?”

Understanding the general goals will help in making decisions about specific treatments in accordance with the patient’s wishes.

Once these have been defined, the clinician may then describe the burden of treatments, possible outcomes, and the likelihood of these outcomes. Doing so will greatly help in the decision-making process for specific treatments.

How to Discuss Resuscitation and Life Support

Making decisions about resuscitation and life support is important for patients to guide future care. However, simply asking your patient whether or not he or she wants to be resuscitated without framing this question in the context of an advance-care-planning discussion may alarm your patient and may limit his or her possibility to make a deliberate decision. Similar to the discussion of specific treatments, the discussion of resuscitation and life support should start with getting to know your patient’s expectations for the future and goals of care.

By referring to those goals that have been established previously, you can explain that some treatments might be necessary in a case of emergency, and it is necessary for the patient to make these decisions in advance to assure that his or her wishes are respected.

Explaining what resuscitation means, when this is needed, and the possible outcomes, is necessary for patients to determine their preferences. Sometimes it can help to phrase these discussions as “hope for the best, but prepare for the worst.”

It is not uncommon for patients to change their minds about treatment preferences. That requires the clinician to reassess patients’ preferences for care on a regular basis and document any changes.

Finally, it is of major importance to stress that a decision to forego life-sustaining treatments doesn’t mean that a patient won’t receive the best possible care to meet their needs and individual goals of care, including optimal symptom management to alleviate suffering.

In the second part of this series, which will be featured in the September ATS News, we will discuss how to introduce to your patient the topics of palliative care, surrogate decision making, and living wills and medical directives.

Daisy J.A. Janssen, MD, PhD, is an elderly care physician at CIRO+, the Center of Expertise for Chronic Organ Failure in Horn, Netherlands. She is also research coordinator at the Centre of Expertise for Palliative care of the Maastricht University Medical Centre in Maastricht, the Netherlands, and the author of 39 publications in the topic of end-of-life care and others. Lynn Reinke, PhD, immediate past chair of the ATS Nursing Assembly, is a research investigator at the Seattle Center of Innovation for Veteran-Centered and Value-Driven Care at the VA in Seattle, and the author of 22 publications in the topic of end-of-life care and others. Both are frequent speakers and presented “How to Manage Fear of Death by Talking About Dying” at the ATS 2014 International Conference in San Diego.


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