Despite recent gains in public awareness, studies indicate most Americans have not completed an advance health care directive or designated someone to make decisions about their health care in the event they cannot speak for themselves.
According to a 2013 Pew Research Center study1), 72% of Americans had thought about their end-of-life treatment preferences, and 62% had talked with someone about their wishes – yet only 35% had put their wishes in writing. Although the level of advance care planning documentation is higher among older adults, there are still large numbers of frail, chronically ill patients who have not completed any kind of advance care planning document.
A key aspect of creating a sustainable health care system is ensuring that patients’ care is aligned with their wishes. The 2014 Institute of Medicine report, “Dying in America – Improving Quality and Honoring Individual Preferences Near the End of Life ,” lists five main recommendations, including improved clinician-patient communication and advance care planning.2)
Are Patients Ready?
Lately, we’ve been seeing an increased willingness to talk about death and dying. Discussion groups dedicated to these subjects have popped up around the country. For example, Death Cafés
, an informal meet-up concept with a mission to “increase awareness of death with a view to helping people make the most of their (finite) lives,” has resulted in more than 1,500 discussion events since 2011. The Conversation Project
– a grassroots campaign focused on making it easier to initiate conversations about dying – is another movement working to get people talking about their wishes for end-of-life care.
These initiatives, along with the popularity of books such as Being Mortal: Medicine and What Matters in the End
, by surgeon Atul Gawande, MD, and The Conversation
, by Angelo Volandes, MD, show increasing awareness of end-of-life issues. This is not surprising, considering the number of people aged 65 years and older will double between 2010 and 2050, with the number of those aged 85 years and older increasing fourfold.
Health care organizations around the country need to prepare for our nation’s aging population. The need for geriatricians and palliative care physicians is on the rise. The shortage of hospice and palliative care physicians has led many to believe that other clinicians – such as primary care physicians, specialists, and nurse practitioners – will need to pick up the slack and be trained in providing palliative care services and in having conversations with patients and their families about advance care planning.
Advance Care Planning Benefits
Advance care planning allows individuals – at any age and any stage of health – to reflect on and express preferences for medical care in advance of medical crises that might affect their ability to speak for themselves. These discussions should happen over time, and they are much easier to start while people are still healthy.
Through open communication and explicit documentation of preferences, advance care planning helps patients and families have greater control over how and where they engage with the health care system. By promoting alignment between care delivered and patient preferences, advance care planning programs can have positive effects on patient and family satisfaction and mental health.
Several recent trials and well-designed cohort studies validate these claims. For example, one study found that residents in nursing homes that provided advance care planning education and discussions were more likely to have their preferences documented for cardiopulmonary resuscitation, artificial nutrition, intravenous antibiotics, and hospitalization, and were much more likely to have their wishes respected.3)
In another randomized trial that studied the impact of a complex advance care planning program, researchers found that satisfaction was higher among patients and families who received advance care planning, and that family members of patients who died had significantly less post-traumatic stress, anxiety, and depression than did families of patients who had not had conversations about goals of treatment.4)
Advance care planning discussions were also associated with earlier hospice referral, which was in turn associated with improved patient and family quality of life.5)
More Value for Costs
Advance care planning provides a way for patients and families to discuss and document care preferences, with the goal of ensuring that the care patients receive is aligned with their goals, values, and priorities. In many instances, when asked about their preferences, patients and families will prioritize remaining at home vs. going to the hospital, and favor comfort and quality of life over invasive treatments that may have limited benefits. In such situations, when patient preferences are honored, the resulting changes in the way patients engage with the health care system can result in lower overall health care costs.
These effects have been demonstrated in several published studies. In a multi-site randomized controlled trial of advance care planning programs in nursing homes, researchers found that per patient health care costs were substantially lower in nursing homes that implemented advance care planning interventions.6) Nursing homes that implemented the intervention also saw fewer hospitalizations per patient and a lower average number of days spent in the hospital.
In another study of the effects of an advance care planning program used in nursing homes, researchers found residents were less likely to die in the hospital,7) and were more likely to be referred to palliative care.
The impact of advance care planning was also seen in a study of the effects of end-of-life discussions between patients with advanced cancer and their physicians. The study found that end-of-life discussions were associated with attempts, intensive care unit admission, and earlier hospice enrollment. More aggressive medical care was associated with poorer patient quality of life and higher risk of major depressive disorder in bereaved caregivers, whereas longer hospice stays were associated with better patient quality of life.8) Thus, advance care planning is a way to increase the value received for our health care dollar.
POLST: A Conversation Tool
Another tool that can aid in advance care planning discussions is the Physician Orders for Life-Sustaining Treatment (POLST) paradigm form.
POLST, a physician order signed by both a doctor and patient that specifies the types of medical treatment a patient wishes to receive toward the end of life, helps patients make more informed decisions and communicate their wishes clearly. As a result, POLST can prevent unwanted or medically ineffective treatment, reduce patient and family suffering, and help ensure patient wishes are followed.
Currently, 17 states have a version of POLST in place, with 24 states in the process of developing an official program. Many of them have different acronyms, including MOLST, POST, COLST, among others.
A 2011 survey conducted for the California HealthCare Foundation found that after hearing a description of POLST, almost two-thirds of Californians said they would definitely or probably want to complete a POLST form if they were seriously ill.9)
A 2010 study analyzed the medical records of more than 1,700 nursing home residents in Oregon, West Virginia, and Wisconsin, and found that POLST helped ensure patients received only the care they wanted. Patients with a POLST form that stated they wanted to focus on relief from pain and suffering were 59% less likely to receive unwanted treatments, such as hospitalization, than those who had only “do not resuscitate” orders. Patients with a POLST form requesting full treatment received the same level of treatment as those patients with default documentation leading to full treatment.10)
Another finding from this study showed that requesting fewer medical interventions does not affect comfort care. Patients with POLST forms requesting fewer medical interventions continued to receive pain management and were found to receive identical levels of treatment for pain and other symptoms as other patients.
How CMDs Can Prepare
Medical directors can lead the way to get systems organized and ready for our nation’s aging population.
Implementing an advance care planning program is the first step. There are a handful of organizations around the country that specialize in creating comprehensive advance care planning programs. When choosing a program, among other factors, it is important to think about how your system differs from other organizations.
Questions you might ask yourself include:
- Can the advance care planning solution be customized for your system?
- How does your system’s culture differ from other systems around the country?
If your state already has a POLST program in place, contact the POLST program coordinators and find out if education is offered to help you become an expert in conversations about life sustaining treatments. If your state does not yet have a POLST program, visit POLST.org
to find out who is leading the charge in your area. They can use your support.
Finally, encourage your clinicians to talk to their patients about advance care planning and advance health care directives. Highlight National Healthcare Decisions Day on April 16th to encourage health care planning conversations between health care providers and your patients.
It’s never too soon to start talking about advance care planning. Talking with patients and their loved ones now and helping them plan for future medical needs is the best way to make sure that their wishes will be respected.
Judy Thomas, JD, an attorney with more than 20 years of experience in health care, is chief executive officer of the Coalition for Compassionate Care of California and chair of the National POLST Paradigm Task Force. Portions of this article are reproduced with permission from the “Value Snapshots” series by the Coalition for Compassionate Care of California, developed with support from the California HealthCare Foundation. Learn more about Value Snapshots
This article is re-posted with permission. It originally appeared in the April 2015 issue of Caring for the Ages
, a monthly newspaper for AMDA – The Society for Post-Acute and Long-Term Care Medicine.
1. ↑ Pew Research Center. Views on End-of-Life Medical Treatments. November 2013.
2. ↑ Institute of Medicine of the National Academies. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. September 2014.
3. ↑ Morrison RS, Chichin E, Carter J, et al. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. JAm Geriatr Soc 2005;53:290-4.
4. ↑ Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345.
5. ↑ Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-73.
6. ↑ Molloy DW, Guyatt GH, Russo R, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000;283:1437-44.
7. ↑ Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300(14): 1665–1673.
8. ↑ Levy C, Morris M, Kramer A. Improving end-of-life outcomes in nursing homes by targeting residents at high risk of mortality for palliative care: program description and evaluation. J Palliat Med 2008;11:217-25.
9. ↑ California HealthCare Foundation. Snapshot. Final Chapter: Californians’ Attitudes and Experiences with Death and Dying. February 2012.
10. ↑ Hickman S, Nelson C, Perrin N, et al. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Amer Geriatr Soc 2010;58:1241-8.