Hospice Patient Preferences for Full Code, Intensive Treatment Produces Ethical Dilemmas
Key findings
- Changing evidence has blurred the hospice-related distinction between curative and palliative care, and capitated rates must cover all costs associated with a terminal prognosis
- In this qualitative study, 51 hospice employees at four sites were interviewed about how they engage with enrollees who choose full-code status and/or intensive treatments
- Multiple participants reported ethical dilemmas about the conflicts between respecting patient/family wishes, avoiding harm and alleviating suffering
- Clearer policies, improved communication and additional ethics training might be useful to hospice employees, but none of those measures can resolve systemic conflicts between hospice philosophy and current payment and policy structures
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The Medicare Hospice Benefit in the U.S. requires enrollees to forgo "curative" treatment, and many hospice employees consider cardiopulmonary resuscitation (CPR) and intensive treatment as deviations from hospice's historic focus on comfort care. However, changing evidence blurs this distinction (e.g., radiation and dialysis are now considered palliative). In addition, capitated rates to hospices must cover all costs associated with a terminal prognosis.
Christine Seel Ritchie, MD, MSPH, director of research in the Division of Palliative Care and Geriatric Medicine and director of the Mongan Institute Center for Aging and Serious Illness at Massachusetts General Hospital, and colleagues have documented that permitting full-code status and intensive treatments in the hospice setting can produce clinical and ethical challenges for hospice employees. Their findings from a qualitative, descriptive, multisite study are published in the Journal of Palliative Medicine.
Study Methods
The participants were 51 hospice employees, evenly split across four sites: 61% clinicians, 25% executive leaders and 14% administrative staff. Clinicians included 23 registered nurses, 21 social workers, seven physicians and two chaplains. All sites accepted full-code patients, had formal processes for documenting patient preferences on admission and trained their staff in advanced care planning conversations.
All staff spoke individually with the same doctoral-level interviewer, formerly a nonprofit hospice leader. The interviews were recorded and transcribed, and the entire research team iteratively reviewed and discussed the transcripts to identify key concepts.
Two of the key themes were that hospice employees encounter challenges when supporting patients who are full code or prefer intensive treatment, and some use specific strategies to engage patients/families in changing those preferences.
End-of-Life Care Conversations Challenges
One participant said clinicians have to consider whether intensive treatments are enhancing quality of life or prolonging the inevitable. Another emphasized the difficulty of making that determination. Multiple participants reported that patients and families sometimes disagree about which intensive treatments are appropriate and that some patients/families who remain full code do not want CPR but will not consent to a do-not-resuscitate order (DNR).
Participants noted tension between respecting patient/family choices, avoiding harm and alleviating suffering, and this distressed some clinicians.
Strategies for Engaging Patients/Families
Some participants acknowledged trying to change patient/family preferences for full-code status or intensive treatments by:
- Educating about treatment options, including clarifying misconceptions about DNRs (not to be confused with "do not treat")
- Using graphic language to describe CPR and other intensive treatments (not all clinicians supported this idea)
- Involving physicians in end-of-life care conversations because of their perceived authority
- Repeating conversations "quite frequently" with full-code patients/families but not with those who have signed a DNR
- Relying on organizational structures such as interdisciplinary team meetings, ethics committees and organizational policies
Hospice Clinician and Referring Provider Suggestions
Hospices need clear policies about whether they must or may accept enrollees preferring full code and intensive treatments. Improved communication before, during and after hospice referral could help inform patient/family and clinician expectations about care. Additional ethics training may also be helpful for employees, but none of these measures can resolve systemic conflicts between hospice philosophy and current policies and payment structures.
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