The most difficult, ethically driven conversation we have with our patients comes when the word “dying” becomes the focus of the discussion. Where to begin? Do I tell them everything? What if they ask me, “How long do I have to live?” Am I going to take away their hope?
These are just a few of the questions that we, as practitioners, agonize over when we have to discuss end-of-life issues. We usually think of such conversations as only taking place in hospitals, but nurse practitioners and physician assistants in primary-care offices are faced with these discussions as well.
Primary-care practitioners often have a long-established relationship with their patients and have become trusted allies in the patient’s health-care decisions.
Having such a relationship with a person who is dying or who has a heightened mortality risk will help us find the best way to broach the topic, identify individuals in the patient’s life who need to be involved in the end-of-life discussion, and work with the patient and family to develop the most appropriate, individualized end-of-life plan of care.
The April 2014 issue of the Canadian Medical Association’s CMAJ journal carries a “conversation guide” entitled “Just ask: discussing goals of care with patients in hospital with serious illness,” by John J. You, of McMaster University in Hamilton, Ontario, Canada, and others on behalf of the Canadian Researchers at the End of Life Network (CMAJ. 2014;186:425-432).
A press release from the university describing the guide outlined steps that can also be taken in the primary-care setting, such as identifying high-risk patients—a process that begins when treatment options have been exhausted or are few and failing.
Another step is that of communicating the prognosis. In my view, this needs to be a face-to-face discussion in the clinician’s office, not in the exam room, with a large block of time set aside for the conversation. Speak in layman’s terms and be straightforward and honest, but also compassionate.
A third measure involves clarifying patient values around the care plan. Ask the patient such open-ended questions as:
- “What concerns you most about your illness or end-of-life care?”
- “Is faith important to you?”
- “Is there still something you want to do?”
Determining what the patient values most in his or her end-of-life decisions is crucial to creating a tailored care plan.
Be sure to involve substitute decision-makers in the planning process as well—those who might make decisions if the patient cannot. Input from social workers and hospice staff can be invaluable at this juncture.
The patient will need to engage in estate planning, make advance directives, create a living will, and register his or her resuscitation orders. The existence of these documents helps to ensure that the patient’s desired end-of-life experience is honored, and makes a difficult situation easier on loved ones.
These components of end-of-life discussions are just the tip of the iceberg. Patients will look to you to guide them through the dying process.
You as well as your patients may wish to consult end-of-life discussion recommendations offered by the National Library of Medicine (www.nlm.nih.gov), the American Cancer Society (www.cancer.org), and the Family Caregiver Alliance (www.caregiver.org).
Debra Clements Coats, RN, BSN, MSN, FNP-BC, is employed with Matrix Medical Network and with an infectious-disease practice in Greensburg, Pa.