Ronald S. Fischler, MD, FAAP and Timothy C. Fagan, MD, FACP
ArMA/ AOMA Joint Task Force on End of Life Care
The Task Force on End of Life Care was established by the Arizona Medical Association (ArMA) and Arizona Osteopathic Medical Association (AOMA) in 2016, to evaluate care and make recommendations. It has involved about 25 physicians from a variety of specialties and locations across Arizona.
A survey was designed to determine how Arizona physicians regard aspects of End of Life (EOL) care; specifically, attitudes toward end of life discussions; knowledge and access to Palliative Care (PC); interest in further education on EOL issues; attitudes on Medical Aid in Dying (MAID); and attitudes on POLST (Physician Orders for Life Sustaining Treatment).
The survey was conducted by email, sent to 8,000 members of ArMA, AOMA, Pima County Medical Society (PCMS), Maricopa County Medical Society (MCMS) and the Arizona Chapter of the American College of Physicians (AzACP), and several specialty societies, and a link was published in the journal Arizona Physician. The survey was conducted from October through December 2017, and a professional pollster was engaged to assist in design and analysis. Funding was provided by a private donor, AzACP, and PCMS.
Respondents were physicians interested in EOL issues, and who were willing to complete the survey, most of whom were members of professional medical organizations.
- 58% Phoenix
- 25% Tucson
- 17% rural/other town
- 22% 25-45 years
- 50% 46-65
- 28% 66+ years
- 32% female
- 68% male
- 36% Primary Care
- 26% Internal Medicine subspecialty
- 11% General Surgery or Surgical subspecialty
- 6% Pediatrics or Ob-Gyn
- 5% Palliative Care
- 18% Other
- Practice Setting
- 29% Hospital
- 33% Clinic/Office
- 9% Hospital and Clinic
- 16% Academic
- 6% integrated system (FQHC, ACO)
- 7% Other
- Training in Palliative Medicine
- Significant 19% (including 5.5% PC specialists)
- Limited 29%
- None 52%
- Experience with End of Life care
- 68% routinely engage in EOL
There were 588 responses, of which 466 completed the entire survey (and therefore formed the basis of the analysis). The margin of error was 4.5%.
- Most surveyed physicians reported feeling comfortable with most aspects of EOL care: discussing advanced directives, delivering “bad news,” discussing
change in care from curative to comfort, assessing decision making capacity,
pain management, and deciding when a patient is appropriate for palliative care.
18% reported feeling less than comfortable with pain management.
- Surveyed physicians reported discussing EOL issues when a patient receives a terminal diagnosis (57%), when prognosis worsens (49%), when death is imminent (46%) and routinely with older patients (37%).
- While a third of physicians do not feel deterred, about 50% believe that family issues (expectations, discord among members or patient readiness) constituted barriers to having these discussions. Notably, physicians with more training in palliative care were less deterred (22% vs 52 %)
- Although Medicare approved two Current Procedural Terminology (CPT) codes for end of life counseling in 2016, 85% of surveyed physicians had not used them.
- Referral to palliative care or hospice was reported by 55% of respondents for patients with a terminal illness. Those with more training in EOL care were more likely to refer.
- Barriers to referral for PC were substantial: 50% viewed families as not ready; costs/insurance concerns were cited by 36%; lack of available PC specialists was reported by 29%. Younger physicians (under 45) were more likely to report that patients did not want to discuss options (66% vs 32%). ER doctors and those in rural areas commented on the lack of palliative care support.
- For purposes of the survey, a “good dying experience” was defined as: expected death, symptoms controlled, family present and family wishes in accordance with the patient’s wishes. How often do surveyed physicians encounter a “good dying experience”? Overall a good death was observed less than 50% of the time. Physicians with the most training reported “good deaths” more often (77% of the time).
- Professional Satisfaction with EOL care:
56% of respondents reported that EOL care was fulfilling and 9% reported that it was frustrating.
More training in EOL care was associated with higher levels of satisfaction.
- Interest in additional training:
42% were interested in additional training for themselves.
67% stressed that education for the public on end of life issues was very important.
- Most surveyed physicians (66%) supported Physician Orders for Life Sustaining Treatment (POLST), which is transportable medical orders for terminally ill patients in the last year of life. POLST are used to document patient wishes and apply to all settings. 76% of respondents want more education about POLST and 58% believed they would use it in practice.
- Medical Aid in Dying. These laws, which have been passed in Oregon, Vermont, Montana, Washington, Colorado and California, allow terminally ill patients who are residents of the State, to make two oral and one written request to a physician to prescribe a medication, which the patient self-administers. Physician participation is voluntary and liability protection is provided. 53% of respondents were in support (33% strongly in support), while 27% were opposed (9% strongly). There were robust comments on both sides of the issue.
While a majority of physicians surveyed reported comfort with care of patients near EOL, over 40% were interested in further education – especially in pain management and palliative care.
This survey showed clear benefits of education: those with more education in EOL care were more likely to view patients as receptive to EOL conversations, make greater use of palliative care consultants, saw fewer barriers to referral, and reported higher levels of professional satisfaction.
Professional and Public Education on EOL is now available in Arizona.
Excellent training modules have been developed for physicians on how to have EOL conversations. Besides CME for practitioners, training in EOL care should be addressed formally in Residency training for all physicians, who are likely to encounter patients near the end of life.
One of these programs, developed by Ariadne Labs, is being launched in Arizona under a grant from the Lovell Foundation to the Arizona Hospital and Healthcare Association (AzHHA). A two-hour training module uses role play to teach participants how to provide information sensitively and to manage the emotional responses of patients. It has been proven effective. For further information about training for providers contact Karen Beckford at AzHHA, email@example.com.
Most physicians in the survey saw public education on EOL as vitally important to help patients feel informed and empowered regarding end of life wishes. Free tools are available online to enable patients to start conversations with loved ones. Public education is also beginning to occur around Arizona under the Lovell Grant to AzHHA. To find out about public education or to volunteer to assist in your area, contact Karen Beckford at AzHHA, firstname.lastname@example.org.
A complete survey report will be published in the next few months. We will be authoring a series of articles on related topics in this publication and other Arizona medical society publications. We look forward to continuing the conversation.
Dr. Fischler is a pediatrician from Scottsdale who chairs the ArMA/ AOMA Joint Task Force on End of Life Care. Dr. Fagan is an internist from Tucson that led the survey committee of the Task Force and serves on the Board of ArMA.
- Lakin, et al. Health Affairs. 2017, 36:1258-1264