In my own practice, advance care planning is a part of every history and physical. In the beginning, I found the topic awkward and uncomfortable to bring up with my patients.
“When you talk, you are only repeating what you already know. But if you listen, you may learn something new.”
-The 14th Dalai Lama
In this issue of ONCOLOGY, Drs. Norals and Smith boldly outline a call to action: ask our patients about their care goals and give them enough information to make educated decisions about how to attain those goals. The authors’ thorough literature review reveals the frequent mismatch between patients’ disease and their understanding of it. With enhanced communication, we can do better.
In my own practice, advance care planning is a part of every history and physical. In the beginning, I found the topic awkward and uncomfortable to bring up with my patients. However, with practice came improvement, and conversations about preferences at the end of life started to feel as natural as a thorough review of systems. My comfort with the conversation increased the patient’s and family’s comfort, and as confirmed repeatedly in the literature, the discussion does not exacerbate anxiety. In patients with advanced cancer, engaging in advance care planning increases knowledge without diminishing hope or worsening anxiety. In addition, Medicare plans to reimburse practitioners for counseling patients about end-of-life care before they become physically or mentally incapable of making decisions.
Asking makes a difference! In a study of patients with hematologic malignancies, patients who discussed preferred place of death with their provider were more likely to die in their desired location. It is not always easy to raise these issues, and some patients will be upset by talking about dying no matter the timing of the conversation. This is an opportunity for us to address the underlying reasons for distress and offer compassionate honesty. Ask more questions like: “I know this conversation can be upsetting; what are you most worried about?”
Although advance care planning discussions are an important factor in providing quality oncologic care, we cannot place too much emphasis on “allow natural death” (AND) or “do not resuscitate” (DNR) directives. A stage I cancer patient undergoing treatment with curative intent may have a preference for AND, as might a stage IV cancer patient who plans to pursue palliative chemotherapy or trial therapies. A DNR directive simply signifies that the patient has a preference to die with all the support needed at the limit of intubation and cardiac resuscitation.
Additionally, we must use language that shows respect for the patient who elects AND or DNR. We must caution our trainees who use language like, “The patient was made DNR,” or, “She’s a DNR,” or worse yet, “We got the DNR.” DNR is an order in the chart reflecting patient preference; just as someone cannot be “made normal saline,” they cannot be “made DNR.” Suggest instead language such as: “Family meeting was held, with the conclusion that AND would be concordant with the patient’s preferences, and a DNR order was placed in chart,” or “Patient expressed her desire to allow natural death, and DNR paperwork was completed.”
Both the Institute of Medicine and the National Comprehensive Cancer Network offer guidelines for clinicians on initiating goals of care discussions while the prognosis is still measured in years.[4,5] The call is clear: Let us support ourselves and our colleagues in this endeavor to promote advance care planning. Acknowledge our colleagues who are advance care planning champions and thank them for engaging in the difficult conversations.
Death will always be the final challenge. We owe it to ourselves, our patients, and their families to engage early in advance care planning and to help patients spend the end of their lives where and how they choose. We can do it!
Financial Disclosure: The author has no significant financial interest in or other relationship with the manufacturer of any product or provider of any service mentioned in this article.
1. Green MJ, Schubart JR, Whitehead MM, et al. Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer. J Pain Symptom Manage. 2015;49:1088-96.
2. Medicare opens up the end-of-life conversation. Lancet. 2015;386:220.
3. Howell DA, Wang HI, Roman E, et al. Preferred and actual place of death in haematological malignancy. BMJ Support Palliat Care. 2015 Jul 8. [Epub ahead of print]
4. Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC: National Academies Press; 2015.
5. Levy MH, Smith T, Alvarez-Perez A, et al. Palliative care, version 1.2014. Featured updates to the NCCN Guidelines. J Natl Compr Canc Netw. 2014;12:1379-88.