Wednesday, May 31, 2023

How Death Doulas Help Those Who Have Decided to Use Medical Aid in Dying

Arlene Radasky | 25-Year Hospice Volunteer and Certified Death Doula/Death Midwife

Disclaimer: All views expressed in this blog are the author’s own and do not represent the view of NHPCO or affiliated organizations.

Virginia grew up on a small farm and was fiercely independent. She worked extremely hard, juggling two jobs to raise her sons after her beloved young husband passed from a heart attack. The youngest of her two sons had an intellectual disability and required much of Virginia’s spare time.

As the boys grew into men, her youngest son, wanting independence for himself, chose to live in a group home. Her eldest son became a dentist and moved across the country.

As Virginia approached 68, she was diagnosed with myositis after several, injury-causing falls. Following two years of treatment, she could not live independently anymore. Additionally, her eldest son had a stroke and was living in a brain injury facility.

Virginia was on Medicaid and was moved to a nursing facility that had a bed available. She eventually declined to the point that she and her doctor decided hospice was the right next step for her wishes. 

She chose a local hospice, was evaluated and accepted, and her care team began caring for her. The hospice death doula volunteer on the team, Mary, made her first visit with Virginia to get to know her. Mary visited once a week for one hour, during which time Virginia became very comfortable with her.

At her visits, Mary helped Virginia fine tune her advance directives, talked about vigils, and planned what Virginia would like to have at hers. Mary also discussed the different options for burials or cremations after Virginia’s death and when Virginia decided on one, Mary made sure it was noted in her advance directives. The hospice team was notified and given copies of the edited advance directives, and Mary made sure a POLST was also completed.

In their many conversations, Mary learned details that Virginia had not felt comfortable talking to the doctor and nurses about. Mary made note of these concerns, such as a suspected bladder infection, in her weekly reports and team meetings. If needed, the subjects were discussed between Mary’s medical team, counselors, and Virginia in more detail.

Virginia continued living in the facility for eight months while she was under hospice care. Her falling risk was high during the last six months of her stay there and she was not let out of bed without supervision. These restrictions cause some toilet accidents that were mortifying to Virginia. Swallowing became more difficult, and the facility tried to compensate by changing her diet, making sure everything was cut into bite-sized pieces and eventually, blending some meals.

At the six month point of Virginia’s hospice care, she began asking about medical aid in dying (MAID). Mary made note of her questions and told Virginia’s team about their conversations. Virginia’s hospice counselor talked to her and together, they made the decision to start the process for Virginia so she would be able to use the option if she wanted to. Virginia asked Mary to transport her and attend the required appointments.

Virginia received the prescription and was told at that time by the facility she was in that she could not be a resident there when she decided to use the option. Virginia became anxious and despondent.

Mary reported this to the hospice team and asked if the hospice facility allowed the option. It did not, and neither did another facility in town. The only option left was to find a bed in a private home.

Mary asked Virginia about her friends with homes who lived nearby. There were very few, but Virginia and Mary contacted one who, after talking to Virginia on the phone, asked to meet with her. Mary picked up her friend, Theresa, and took her to meet with Virginia. They talked for an hour about the past, Virginia’s disease, and her decision. Mary then took Theresa home. One week later, she called Virginia and said she had an extra room where she could come stay for a while.

Mary told the hospice team a bed had been found. Together, Mary and a hospice nurse went to visit Theresa and look at the room. It was found appropriate, and a hospital bed was ordered for Virginia to be able to be in.

Mary was with Virginia during her transport to Theresa’s home and was able to make her comfortable, reporting back to the hospice team that Virginia was laughing with Theresa when she left.

Mary continued her weekly visits with Virginia, who had been on a liquid diet for two weeks when she said she was done and wanted to take the medicine. Mary discussed this decision with Theresa and with her hospice team, and the date Virginia had requested was assigned.

On the day Virginia chose, Mary arrived early so Virginia’s requested vigil space could be set up. A small fountain bubbled in the corner of the room. Virginia was changed into her requested night gown and made comfortable. Large scarves were draped around the windows to create a softer atmosphere, and over Virginia as she lay in the bed. Virginia’s chosen music was playing on Mary’s phone lying next to Virginia. Theresa came in to say goodbye but said she could not stay in the room while Virginia was dying. Mary said she would come tell her when it was over.

The nurse came and helped Virginia mix the medication with her choice of fruit juice. Virginia drank it when it was time. Mary sat next to Virginia, holding her hand at Virginia’s request the entire time.

Virginia continued breathing for longer than expected and the nurse left to attend to other patients while Mary stayed with Virginia during her vigil. After Virginia’s last breath, Mary called the hospice, reported that she needed a nurse to come to declare death, and went to tell Theresa that Virginia had died.

Mary sat with Theresa until Virginia’s body was removed. Mary made one more visit with Theresa a week later to talk about her grief, and to let her know about grief resources in the community.

Mary, the volunteer Death Doula, added many hours of compassionate discussion and attending to personal details for Virginia while she was a hospice patient.

Wednesday, May 17, 2023

A Conversation with Dr. Aditi Nerurkar, Leading Stress and Resilience Expert

Dr. Aditi Nerurkar, MD, MPH

Dr. Aditi Nerurkar is a Harvard physician, Forbes contributor, and an NBC News medical commentator. Her expertise is in the science of stress, resilience, and burnout. She offers insights in optimizing mental health, wellbeing, and productivity during the Covid-19 pandemic and beyond.

Dr. Nerurkar is on faculty at Harvard Medical School in the Division of Global Health & Social Medicine and serves as the Co-Director of the Harvard Clinical Clerkship in Community Engagement. Prior, she worked in global public health in Geneva, Switzerland with a World Health Organization collaborating center.

NHPCO had the opportunity to sit down with Dr. Nerurkar and ask her a few questions about leading high-quality programs in the healthcare sector, and her lessons learned over the years. NHPCO questions are italicized for clarity.

How will we know when the pandemic is over? Will we know when we have reached the “new normal?”

We are officially in the post-pandemic era from the policy perspective. On May 5, the World Health Organization (WHO) declared the end of the global health emergency but still said that COVID continues to be a global health threat. We are at present entering the new normal. That doesn’t mean that people won’t continue to get COVID or to be hospitalized and potentially die from the infection, it simply means we don’t have the policy guardrails, funding, and coordination we once did when it was considered a global health emergency. There are many downstream implications of this, many of which we cannot understand or begin to perceive now.

Why should hospice and palliative care teams enhance their focus on burnout and mental health? Where should they begin?

Every industry should be focused on mental health at this time because we are seeing unprecedented levels of mental health issues among employees across sectors. We’ve endured a major global event with broad ramifications on mental health, stress, and burnout. Particularly for those in the healthcare sector, this is especially marked. Prior to the pandemic, we were already noticing a rise in burnout among healthcare staff.

However, the pandemic exponentially accelerated this rise. We now have an epidemic of burnout among healthcare workers. We need to heal the healers

There are so many ways to begin to focus on protecting healthcare workers mental health and burnout. The first is to remove the burden of responsibility off the individual healthcare workers. This is a system-wide issue that needs systemic solutions. Broader institutional approaches to protect burnout must be instated. The American Medical Association has a wide array of resources and data on how to do this within an institution.

At the same time, we can support our healthcare workers by normalizing and validating this experience for them. Data shows that 60-72% of healthcare workers have at least one feature of burnout. We must do more to aid in burnout recovery for these individuals, who are now the majority.

You note that the pandemic has created an “occupational health crisis.” What does that mean?

We refer to the pandemic as a public health crisis, which it has been. But it’s also been an occupational health crisis and a mental health crisis. Mental health has been the shadow pandemic. We’ve seen an unprecedented rise in stress and burnout during the pandemic as well as a rise in stress-related conditions like anxiety, depression, and insomnia. The focus on recovery should include both individual and institutional factors. We must help individual healthcare workers recover from their burnout, but we also must focus on systemic solutions to help create more sustainable working conditions and an environment that supports the mental health needs of the individual workers. When an organization’s culture and an employee’s experience can align, that’s when mental health is optimized.


If you’re interested in learning more from Dr. Nerurkar, she was a keynote speaker at the NHPCO 2023 Virtual Interdisciplinary Conference. Her session recording, The Reentry Phenomenon: A Blueprint to Navigate the New Normal, is now available in the conference portal for attendees. If you are not yet registered for the conference, register now and access the recording along with an extensive on-demand content library offering 22+ hours of CE/CME-eligible education.

NHPCO members can also find more resources on the end of the PHE through the NHPCO Regulatory and Policy Alerts webpage, under Updates and Alerts and titled “Final CMS Guidance for the Expiration of the COVID-19 Public Health Emergency (5/2/23).”


Thursday, May 4, 2023

A Conversation with Dr. Ted James of Harvard Healthcare System

NHPCO had the opportunity to sit down with Dr. James and ask him a few questions about leading high-quality programs in the healthcare sector.

Ted James, MD, MHCM, FACS
Medical Director and Vice Chair, Beth Israel Deaconess Medical Center
Associate Professor of Surgery, Harvard Medical School

Dr. Ted James is a medical director and lecturer within the Harvard Healthcare System with extensive experience in efforts to advance healthcare. He leads international programs focused on digital health, clinician engagement, and patient experience, and collaborates with healthcare executives and industry experts from around the world.

He is an author who writes about the trends shaping the future of medicine and strategies for transforming the healthcare ecosystem. Dr. James has received numerous awards for his contributions to teaching, leadership, and quality. One of his greatest professional satisfactions comes from partnering with others to reimagine healthcare in ways that improve organizational performance and the wellbeing of patients, care teams, and communities.

NHPCO had the opportunity to sit down with Dr. James and ask him a few questions about leading high-quality programs in the healthcare sector, and his lessons learned over the years. NHPCO questions are italicized for clarity.

Why should hospice and palliative care teams enhance their focus on quality?

Focusing on quality improves patient outcomes and enhances the patient and family experience, which results in greater confidence in the care team. These have been shown to improve pain and symptom management. Essentially, the quality focus improves the patient's overall quality of life. Quality also leads to more efficient and less costly care, which is critical in the era of value-based care. Lastly, focusing on quality is a source of professional satisfaction

Where should hospice and palliative care teams begin in their quality improvement process? What does an organization focused on quality look like?

Start with a comprehensive assessment of current performance and then identify areas for improvement. This should be a leadership-supported, team-based approach with measurable goals and action plans to address identified gaps in care. Regular monitoring and measurement of outcomes with a constructive, not punitive, focus should be done to track progress and make necessary adjustments. The organization should be focused on continuous quality improvement, always seeking to elevate the next level.

What advice do you have for hospice and palliative care teams focusing on clinical innovation and leadership development?

Embrace change. Foster a culture where change is welcomed and seen as necessary to meet the future needs of patients. Leaders should promote psychological safety where people feel safe to ask questions, admit mistakes, challenge norms, and provide new ideas. Create venues for brainstorming and collaboration. Having opportunities for individual growth and professional development are also critical. Finally, realize that we can all be leaders and take ownership in making things better.

How can hospice and palliative care teams overcome resistance to new ideas?

People are not so much resistant to change as they are resistant to uncertainty. Conveying the "why" behind change, the purpose, can be a powerful way to motivate others. Involving people in the change process is also crucial to getting by in and overcoming resistance to new ideas.

What are some organizational best practices to encourage leadership at every level?

One of the best ways to foster leadership is simply to provide leadership opportunities. Make sure people have opportunities to initiate and lead projects. Seek out people who show potential and give them a chance to shine. Make certain to encourage autonomy and ownership; nothing will stifle leadership development like micromanagement. It also helps to recognize and reward good leadership.

How do you become a high-performing team? How do you know if you are a high-performing team?

High-performing teams need open communication, shared goals, structured processes, and, most importantly, mutual respect and mutual support. Great teams also have high expectations for the team and for individual members. They regularly evaluate their performance, deal with conflicts effectively, and celebrate wins collectively.

What advice can you share on how to enact transformation at different scales (i.e., system/organization-wide versus departmental)?

It requires tailoring the approach to the specific context. Organization-wide transformation needs centralized leadership, extensive strategic planning, and strong communication channels. Departmental transformation needs engaged champions who can spearhead targeted interventions. Well performed departmental initiatives that align to the goals of the organization will often scale to system wide. programs.

What are some steps hospice and palliative care leaders can take to develop leaders at all levels of an organization? What mistakes are healthcare leaders currently making when it comes to leadership development?

Mistakes in leadership development include neglecting to offer adequate resources and support, not recognizing and rewarding leadership behaviors, and not promoting a culture of inclusivity and diversity.

What are some tips that care team members can use to center their focus on the greatest priority of healthcare (and often, the reason for their connection to their work) – the patient?

Prioritize meeting the needs of our patients. We can understand their needs by actively listening to patients and families. Other key approaches are to communicate with empathy, strive to meet patient's physical, emotional, cultural and spiritual needs, convey respect, and empower patients through education and shared decision-making.

What’s the best piece of advice you’ve ever received?

That's a difficult one. I've received good advice from many mentors over the years. I think we should all view patient care as a calling. Also, we should remain curious and never stop learning. Healthcare is constantly evolving and being open to new ideas is essential for quality improvement.

What are some leaders doing that other leaders should be doing?

Leaders should think about how healthcare can innovate to improve the patient experience, including leveraging technology to improve care coordination and patient outcomes. We've seen great advances in other industries that are meeting user needs through technology and innovation. By embracing change and learning lessons from outside healthcare, leaders can drive positive changes.

Are there any other questions that we should have asked you that you’d like to ask and answer yourself?

Clinical teams are under a great deal of stress. Burnout is a serious threat. We should be asking how to use the power of teams and teamwork to support and revitalize the clinical workforce. Leaders and individual team members can take steps to promote mutual support, psychological safety, and a sense of inclusiveness and belonging that helps to address these challenges and allows teams to thrive.



If you’re interested in hearing more from Dr. James, he was a keynote speaker at the NHPCO 2023 Virtual Interdisciplinary Conference. His session recording, Revitalizing Your Healthcare Teams Through Action-Based Leadership, is available in the conference portal until May 24. Attendees can watch and re-watch the presentation to glean takeaways for them and their teams.