The final stages of life can be filled with challenging, nuanced situations for some patients and their families. Ensuring goal-concordant care and autonomous end-of-life decision-making requires careful ethical, legal and operational considerations.
Staff education and proactive policy development are important for hospices to harness in complex situations, according to Jeanne Chirico, president and CEO of the Hospice & Palliative Care Association of New York State (HPCANYS).
A number of difficult life circumstances can limit hospices’ ability to provide patients with care that is in line with their wishes, Chirico indicated. Hospices need to have a firm understanding of the possible ethical and legal limitations that staff may encounter, as well as establish procedures that help address them.
“It’s having policies in place that help the staff navigate decisions each time the situation is encountered,” Chirico told Hospice News. “It’s thinking in terms of worker safety protocols that go down to the emotional and psychological safety, and not just their physical safety. We need to have those additional mental health supports for staff who are witnessing the complex situations. Those policies and practices go hand-in-hand with staff education and interdisciplinary group discussions.”
Understanding, addressing the complexities
Some of the more challenging ethical situations can involve patients with substance abuse issues, individuals who have experienced trauma, violence or abuse or those with serious mental illnesses. Examples also include treating incarcerated individuals or patients experiencing homelessness, among others.
Unique ethical and safety considerations come into play when supporting underhoused or homeless patient populations, according to Kyla Winters, chief development officer and founder of Hospice for the Homeless, part of San Diego-based Alpha Project.
Individuals experiencing homelessness face practical and logistical challenges when it comes to medication management, durable medical equipment needs or adequately addressing pain and physical symptoms. Clinicians need best practices and leadership guidance to provide the highest quality experiences, as well as ensure both patient and staff safety in these circumstances, Winters indicated.
“[It’s having] a firm understanding of harm-reduction, low-barrier motivational interviewing, cultural competency and trauma-informed care, [as well as ] support securing caregivers, frequent check-ins and stable and safe housing as a patient declines,” Winters told Hospice News in an email. “[It’s] hospice providers willing to provide service wherever the client is.”
Patients and their families in complex situations may need additional layers of support and a more specialized knowledge of their unique needs, according to Yelena Zatulovsky, vice president of patient experience, AccentCare. The Dallas-headquartered organization provides hospice, home health, personal and palliative care.
Collaborations with various community organizations and subject matter experts are critical to forming the best ethical and goal-concordant care delivery approaches in complex situations, Zatulovsky said. Also important is having a systemic approach of digging into various situations from an ethical perspective, which can involve interdisciplinary staff education, training modules and case study examination.
“These nuanced situations mean that we need to partner with experts such as substance abuse disorder specialists, local street medicine teams, trauma-informed experts, thanatologists, therapists of different integrative modalities or those with experience serving incarcerated or formerly incarcerated people,” Zatulovsky told Hospice News. “It’s really merging our knowledge together. We do a lot of ethics consultations throughout the year and take moments to do education on ethical principles and decision making to help staff really learn from a bioethical lens.”
Each complex end-of-life situation may require a different care delivery approach, and it’s important for hospices to understand legal requirements alongside the ethical considerations, Chirico indicated.
Having interdisciplinary team meetings that examine the ethical concerns can help staff be more prepared and confident in their ability to support patients, she indicated.
“It’s having policies that help staff understand that this is not an independent, subjective decision,” she said. “There are drug diversion practices for patients with substance abuse issues. It can be involving pharmacists and behavioral health specialists who have an understanding of mental health medications. There is education about trauma-informed care. There are very specific requirements and legalities that need to be in place to provide care in correctional settings. It’s helping staff have the skills to escalate and manage these situations in a timely manner.”
Building strong ethical frameworks
Providing quality end-of-life experiences involves hospices keeping the four core ethical principles of autonomy, beneficence, nonmaleficence and justice at the heart of every decision about patient care, Zatulovsky indicated. Focusing on these guiding principles can make substantial differences in staff’s ability to make well-informed ethical decisions and address patient’s goals of care.
Patient-focused care can take on different contextual structures in more complex situations, Zatulovsky said. Every part of a hospice’s operational framework needs to have a stake in ethical decision making, she added.
“It’s a balancing act of each group, from compliance, legal and ethics teams,” Zatulovsky said. “It’s having different representatives, because what is ethical isn’t always what is legal and what is legal isn’t always ethical. It’s doing a deep dive into informed consent, into truth telling, boundary setting and our responsibilities as providers. It’s training people who provide that goals of care conversation with what’s underneath the root of the question being asked and keeping ethics at the forefront.”
Hospices need policies in place that balance patient needs, staff safety and nondiscrimination laws regarding equitable access, according to Tony Kudner, chief strategy officer of the consulting firm Transcend Strategy Group. An organization’s leadership plays an important role in shaping policies and procedures that keep this trio of concerns front and center, he stated.
Hospice leaders who foster strong staff engagement are more tuned into the commonly complex ethical situations faced by their frontline clinicians, which can provide unique opportunities to address concerns through specialized and appropriate education, Kudner indicated. This involves having a proactive leadership approach to ethical decision making.
“One thing that sticks out to me here is leadership development,” Kudner told Hospice News in an email. “This isn’t something that can be mastered by simply purchasing an ethics course and putting it on your internal learning management system. Having leaders who are stable in their roles, supported and empowered to lead — as opposed to running from crisis to crisis — will help an organization provide excellent patient care, support staff in the home and remain compliant [in] high quality while doing so.”
Navigating complex end-of-life situations can often involve recognizing the personal biases that can come into play among hospice providers, said Jessica Empeño, national director for clinical engagement at the end-of-life resource provider Compassion & Choices.
Interdisciplinary staff training should include ongoing assessment and awareness when it comes to the various impacts of biases and personal values or beliefs, Empeño stated. Providing this type of training can become invaluable to employees providing ethical and quality care in complex circumstances. It can help with retention by helping staff feel more supported and recognized for the important services they provide and challenges they experience, she stated.
Organizational culture also plays a key role in the management of complex end-of-life situations, according to Empeño. Having a workplace environment that encourages discussions about challenging circumstances is important to sustaining staff in their roles and ensuring stronger goal-concordant care.
“People have their own stereotypical idea of what a good death looks like, but that’s different for everyone,” Empeño told Hospice News. “Educating people who work in end-of-life care on how to be aware of their unconscious and personal biases helps them be more comfortable in providing care or referring to someone else who can. This is where ongoing education is really important and why the ethical standards are everyone’s responsibility for ongoing professional development. It’s looking at the culture of your environment and whether your organization creates space for people to safely have learning opportunities and never in a punitive way.”