How to Talk about End-of-Life Care and Dying with Your Patients: Part 2

September 2, 2014 at 12:08 am


Lynn Reinke, PhD


Daisy Janssen, MD, PhD

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

In our previous column, we covered when to begin the discussion, identifying goals of care with your patient, and how to broach the topics of resuscitation and life support. Just as integral to meaningful conversations about end-of-life care and dying are the topics of palliative care, surrogate decision-making, and living wills and medical directives. In part two of the series, we’ll cover these topics and provide examples of proper phrasing to allay fears and engage in productive discussions with your patients.

How to Introduce Palliative Care (PC)

Many patients do not understand the meaning of palliative care or they equate palliative care with hospice. It is often helpful to introduce palliative care as “supportive care” that focuses on symptom management and team communication about the patients’ care wishes. It is important to emphasize that palliative care is provided in addition to a patient’s current treatment plan. For example, a patient with lung cancer can be treated with chemotherapy and simultaneously receive supplemental care that controls the side effects of chemotherapy.

The palliative care team comprises a multi-disciplinary group of specialists including, but not limited to, physicians, nurses, nurse practitioners, other allied health care professionals, social workers, and chaplains. The team is trained in effective communication to facilitate clear understanding of the patient’s disease prognosis and to help clarify the patient and family’s wishes for care align with their values. The ultimate goal of effective communication is for the patient to receive the type of care he or she desires.

How to Frame a Palliative Care Discussion

If a PC service is available: “We may want to consider consulting the palliative care specialists to help us develop your plan of care. Palliative care is a specialty service that will help ensure your symptoms are controlled and your quality of life is optimal. Decisions about your treatment plan should be based on your preferences for care and communicated to the entire health care team so we are all on the same page. The PC team will help us accomplish that.”

If a PC service is unavailable: “Our medical team takes an approach to care that integrates the principles of palliative care into your usual care plan. Palliative care can be thought of as supportive care that will help ensure your symptoms are controlled and your quality of life is optimal. We may ask for help from specialists such as pain doctors or physiotherapists to help us address your specific needs. Decisions about your treatment plan should be based on your preferences for care and communicated to the entire health care team so we are on the same page. We may ask for help from a social worker or nurse to help us accomplish that.”

Surrogate Decision-Making

It is important for a patient to identify a relative or close friend whom they trust, knows the type of care they desire, and is able to make crucial decisions on their behalf if they ever become noncommunicative. This person is referred to as a “health care proxy,” advocate, or, ideally the “durable power of attorney for health care” in documents.

How to Frame the Topic of Surrogate Decision-Making

“In the event you become very ill and are unable to communicate your wishes to your family and medical team, a surrogate decision maker can be your ‘voice’ to ensure the care you receive is what you would want if you could speak for yourself. But your decision-maker can only do their job well if you have discussed your wishes in advance. It is helpful if your surrogate decision-maker is identified ahead of time and we document this person on a form so that everyone is aware.”

Living Wills and Medical Directives

Living wills and medical directives are documents that inform family, close friends, and the medical team about the patient’s preferences for health care. The forms investigate how the patient wishes to be treated if he or she experiences pain, nausea, or other symptoms. They contain questions and scenarios such as: “in the event that you cannot breathe on your own, would you want the medical team to place you on a breathing machine?” and “how I want symptoms to be managed.”

The forms often include a highly important statement that the patient is asked to either agree or disagree with: “I do not want to be in pain. If I am in pain I want my doctor to give me enough medication to relieve my pain even if that means I will be drowsy.”

While these topics are often sensitive and hard to bring up, these documents can patients begin these conversations with their loved ones.

Be sure to articulate to your patient that even though it may be hard to talk about getting sick and end-of-life care, there are many benefits of these conservations. Imagine being in a situation where you would need to make difficult decisions without knowing the other person true wishes. These discussions and forms can take a huge burden off of loved ones and inform the health care team of the patient’s wishes for care.

People change their minds every day. Be sure to remind your patient that this is OK, and that they will be able to make changes to the forms.

Further Resources

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. 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. 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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