By Emma Duelm

This Happened to Me
I was doing my clinical rotations in a hospital, caring for a patient with dementia and
colon cancer. She had been there for a few weeks and was not getting any better. Her physicians
and family decided to admit her to hospice care to allow her to peacefully pass. I came back to
the hospital a week later to find out that morning that she had passed away. Along with other
nurses, we performed post-mortem care. While I have had loved ones pass away, this was my
first tangible experience with death. As a nurse, you are supposed to stay emotionally intelligent
and not show any distress, especially in front of patients. This was a challenge for sure, as all I
could think of as we cleaned the woman’s body was seeing her husband hold her hand and talk to
her gently through the cracked door as I walked past. As I sat in a research conference at
Shenandoah University months later, I listened to a hospice nurse practitioner share her research
on nurses caring for dying patients and their families and wondered if that woman died the
way she wanted to or if the choices were made solely by her clinicians.

My Story is Not Unique, Here’s the Problem
With the growth of the aging population, there is a greater need for access to hospice
care. Lack of training and discomfort with caring for palliative care leads to poor satisfaction
with care and impaired patient autonomy. Hospice care puts nurses in an uncomfortable position.
Since the main focus for nurses is normally on keeping a patient stable and alive, assisting
patients in dying comfortably and peacefully is uncomfortable and “alien” to many. To make
matters worse, some nurses have an apathetic attitude since the patient is already dying. A study
conducted by Liu et al. showed that despite 81% of nurses rating their knowledge of hospice care
as insufficient, 65% reported not receiving hospice care training (2021). 72.5% of the nurse
respondents in the study expressed unwillingness or uncertainty to practice hospice care (Liu et
al., 2021). Chen et al. stated that training in hospice care was a common factor in nurses’
attitudes toward, knowledge of, and willingness to practice hospice care in the future (2022).
Patient satisfaction with care is greatly impacted by a lack of hospice training and poor attitudes
toward hospice care. In an interview conducted by Wentlandt et al., caregivers also experienced
excess stress as a result of poor communication with healthcare professionals (2016).

Some caregivers stated that they felt they had to be increasingly diligent to ensure that their loved ones
were taken care of the way they wanted (Wentlandt et al., 2016). They felt that they were not
consulted as often as they wanted to be and found that the constant unfamiliar faces of the many
healthcare workers added to the stress (Wentlandt et al., 2016). They expressed that it would be
easier to deal with their situation if they had only a few people to take care of their loved ones
(Wentlandt et al, 2016). Lack of patient autonomy especially impacts patient satisfaction with
their care. The most important aspect of patient autonomy is knowledge. With that knowledge,
patients are empowered to make decisions that are best for them and have control over their care.
Niemeyer-Guimaraes et al. stated that many patients die in the ICU after aggressive treatments
fighting disease when they would rather have died at home (2017). While advancements have
been made in the healthcare process to a more person-centered approach, busy healthcare
professionals do not always take the time to fully explain concepts and options to their patients
so that they can make informed decisions. Vernooj-Dassen et al. warned, however, that sharing
decision-making with patients does not mean doing exactly what the patient wants; sometimes
fulfilling the ethical principle of beneficence means that one must listen to their own judgment (2005). However, again, it is still vital to build rapport with the patient and follow a person-
centered approach while providing care.

Here is a Nonprofit Working to Solve the Problem
The Hospice Foundation of America educates the public and healthcare professionals
about death and dying through educational programs, books, tutorials, and videos. They also
support hospice and/or grief initiatives. Through their hospice care certification, medical
personnel can obtain continuing education credits. Their certification is available for case
managers, clergy, funeral workers, physicians, nurses, psychologists, social workers, and more.
Their grief initiatives include resources tailored for children, caregivers, and workplace grief, as
well as resources on different support groups. All their services are free, so it is highly accessible
to anyone who might need them.

What Can You Do?
Action and education are the most important steps to improve hospice care. Donating to
organizations promoting hospice care reform and education, like the Hospice Foundation of
America can help to further expand its outreach to both families and also to professionals who
interact with individuals admitted to hospice care. Donating money to non-profit organizations
ensures that resources can continue to be freely available to those who need them.

References:

Chen, L., Li, X.-H., Pan, X., Pan, Q.-N., Huang, H.-Q., Tao, P.-Y., Li, G.-Y., Ma, J.-H., &
Huang, J.-C. (2022). Nurses’ knowledge, attitudes, and willingness to practice hospice
care: An analysis of influencing factors. PLOS ONE. Retrieved September 2022, from
https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0259647

Hospice Foundation of America. (2022). What we do. Hospice Foundation of America. Retrieved
September 2022, from https://hospicefoundation.org/About-HFA/What-We-Do

Kenrick, C. (2022). As aging population rises, more people turn to hospice for enrichment,
comfort. Palo Alto Online. Retrieved September 2022, from https://paloaltoonline.com/news/2022/04/01/as-aging-population-rises-more-people-turn-to-hospice-for-enrichment-comfort

Liu, Q., Tao, J., Gao, L., He, X., Wang, Y., Xia, W., & Huang, L. (2021). Attitudes of Front-
Line Nurses Toward Hospice Care During the COVID-19 Pandemic. The American journal of hospice & palliative care, 38(2), 204–210.
https://doi.org/10.1177/1049909120968533

Vernooij-Dassen, M., Osse, B., Schadé, E., & Grol, R. (2005). Patient autonomy problems in
palliative care: Systematic development and evaluation of a questionnaire. Journal of
Pain and Symptom Management. Retrieved September 2022, from
https://www.sciencedirect.com/science/article/pii/S0885392405003210

Wentlandt, K., Seccareccia, D., Kevork, N., Blacker, S., Grossman, D., & Zimmermann, C.
(2015). Quality of Care and Satisfaction With Care on Palliative Care Units. Journal of Pain and Symptom Management. Retrieved September 2022, from
https://www.jpsmjournal.com/article/S0885-3924(15)00567-9/fulltext