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End-of-Life Care

Challenges in End-of-Life Care

Delaware Technical Community College

Madison Rash

NUR 330-5W1: Nursing Research

Professor Bonita Blackman

May 3, 2022
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Challenges in End-of-Life Care

Introduction

The term end-of-life care is often used to describe the support and medical care that is

given during a person’s final stages of life (NIH, 2021). End-of-life care is not necessarily care

that happens right when someone is about to pass. More often it can be for people who live with

one or more chronic illnesses and need more significant care for days, weeks, and even months

before their death (NIH, 2021). Each person’s end of life is different because it depends on their

preferences, needs, or choices (NIH, 2021). People who are dying may be at their home or others

often seek treatment in a hospital. There are also times where people have battled a chronic

illness for years but have an acute change that cause them to go to their local hospital to be

treated and often that is when they are finally placed on palliative care. There are also times

when peopled go to the hospital and once they’re placed on palliative care, they do not make it

back home to pass peacefully. People who are actively dying will need care in four main areas:

physical comfort, mental and emotional needs, spiritual needs, and practical tasks (NIH, 2021).

Lastly, family of the loved one who is dying also needs support with practical tasks and

emotional distress (NIH, 2021).

Difference Between Palliative and Hospice Care

Palliative care is a specialized type of medical care that is for people living with a serious

illness, such as cancer or heart failure (NIH, 2021). Patients who are in palliative care may

receive some medical care to help their symptoms. However, palliative care patients who are also

receiving treatment may have intentions to cure their serious illness. “Palliative care is meant to

enhance a person’s current care by focusing on quality of life for them and their family” (NIH,

2021). Patients who want to enroll in hospice care are living with a serious illness such as
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Parkinson’s, chronic obstructive pulmonary disease, cancer and more. Palliative care can be

helpful at any stage of their illness but is best if it is provided soon after they are diagnosed

(NIH, 2021). Once a patient decides to enroll in palliative care, it does not mean that they must

stop treating their illness. Over time, however, if the doctor or palliative care team believes that

ongoing treatment is no longer helping, there are two options (NIH, 2021). Palliative care could

transition into hospice care if the doctor believes that the patient will more than likely pass

within six months. On the other hand, palliative care could transition into treating symptoms still,

but more focused on comfort care (NIH, 2021).

Palliative care can be provided in hospitals, nursing homes, outpatient palliative care

clinics, and other specialized clinics, or even at home. Medicare, Medicaid, ad other insurance

policies may cover palliative care (NIH, 2021). Also, patients who are veterans may also be

eligible for palliative care through the Department of Veterans Affairs (NIH, 2021).

Hospice care is often a type of medical care that is chosen at the end of life. Hospice care

focuses on the care, comfort, and quality of life for a person with a serious illness who is

approaching their end of life (NIH, 2021). For people living with a chronic illness, at some point

they may not be able to cure it. Or, it is possible for a person to decide that they no longer want

treatments for their illness. Hospice care is like palliative care in the aspect of how care is done.

Hospice care provides comprehensive comfort care as well as support for the family. However,

in hospice care, all measures are stopped in terms of treating the chronic illness. Hospice care is

provided to a patient who has a terminal illness, and their doctor believes that they have six

months or less left to live while letting the illness run its natural course (NIH, 2021). There are

times that people don’t begin hospice care soon enough to take full advantage of it.
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Hospice care can be offered in two types of settings, at home or in a facility such as a

nursing home, hospital, or even in a separate hospice center (NIH, 2021). Hospice care consists

of a team of nurses, doctors, social workers, spiritual advisors, and even trained volunteers (NIH,

2021). A member of a hospice team usually visits regularly, and someone is always available by

phone. Lastly, if a person is beginning hospice care it may be covered by Medicare and other

insurance companies.

Challenges in End-of-Life Care for Healthcare Workers

In end-of-life care, there are many challenges for healthcare workers to face. For

healthcare workers who oversee the treatment at the end of life often face obstacles to providing

optimal care. Most healthcare workers face obstacles such as inadequate preparation for helping

have difficult conversations, insufficient compensation, and personal discomfort with dying and

death (Woo et al., 2006). Being a part of end-of-life care involves engaging in difficult

conversations and managing care of a dying patient. Many healthcare workers do not even

receive any type of training for knowing how to manage end-of-life care. Now, more than ever,

this is something that should be addressed an apart of onboarding for new hires. There is also an

aspect of personal discomfort for healthcare workers when dealing with a dying patient. This can

cause personal anxiety and distress. For nurses specifically, although they are required to

advocate for their patients and support end-of-life care decisions as part of their professional

role, majority of nurses do not work in specialty hospice settings or even possess the special

skills associated with end-of-life care (Griffiths, 2019).

Challenges in End-of-Life Care for Patients

One of the top challenges in end-of-life care is pain and even the fear of pain (Woo,

2006). To have patients be free of pain is one of the top aspects of care in end-of-life care. To
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make them as comfortable as possible, pain medications are typically administered, especially

for the last day or hours. Another aspect of end-of-life care that is often a challenge is depression

and coping with their disease. Some patients may be optimistic, however, others may not. End-

of-life care for patients in the hospital is the same as it would be at home. The overarching goal

is that we want the patient to be the most comfortable they can be for their final moments.

Nursing Role in End-of-Life Care

When transitioning a very sick patient to palliative/hospice care, nurses can make a major

contribution to their end of life. Nurses who are taking care of patients that are palliative or

hospice are assessing for pain and other symptoms of distress such as high respirations. When

nurses see that their patients are empiercing signs of discomfort such as restlessness, confusion,

agitation, or irregular breathing they must make the decision on what medication they could give

their patient to help them. For example, for a patient with high respirations and is restless, if they

are receiving morphine through their IV, it is the nurse’s responsibility to assess their medication

order to see if they need to receive a bolus or increase their rate. Another option, the nurse could

see what medication is ordered as needed that could help such as Ativan. Nurses are also

responsible to work with family members to help with the psychological and spiritual territories

that come with a loved one’s passing. While it can be difficult for one to know exactly when

someone’s death is near, there are common signs and symptoms that healthcare workers can

educate the family members on. When a family member is restless, has irregular breathing,

gurgling or crackling sounds while breathing, or if they are still awake enough to report seeing

someone who has already died, this is when the nurse or other healthcare team member can step

in to try to give the family a warning that their loved one may be passing soon (Mayo Clinic,

2020). It is also important to support the family members and still show their loved one the
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respect they deserve, such as continuing to speak with them and touch and comfort them (Mayo

Clinic, 2022). It is also important to encourage the family members to do the same and remind

them that the dying family member can still hear them (Mayo Clinic, 2022).

Healthcare Policies in End-of-Life Care

Policies in end-of-life care are difficult. For patients with Medicare Part A, they are able

to receive hospice benefits if they meet criteria as such: get care from medicare-certified hospice,

their attending physician (if they have one) and the hospice physician deems them as terminally

ill, with a medical prognosis of six months or less to live if the illness were to run its normal

course, and they sign an election statement to elect the hospice benefit and waive all rights to

Medicare payments for the terminal illness and other related conditions (CMS, 2022).

Population

According to the National Hospice and Palliative Care Organization (NHPCO), 1.61

million Medicare beneficiaries who died were enrolled in hospice care for one day or more in

2019 (NHPCO, 2021). That number includes patients who died while enrolled in hospice, were

enrolled in hospice in 2018 and continued to receive care in 2019, or left hospice care alive

during 2019 (live discharges) (NHPCO, 2021). In 2019, among beneficiaries who identified as

female and died in 2019, 56.2% used hospice and 43.8% did not. Among beneficiaries who

identified as male and died in 2019, 46.7% used hospice and 53.3% did not. The age range for

the population of patients enrolled in hospice care varies but is mainly patients who 75 years of

age or older. According to NHPCO, nearly 63 percent of Medicare decedents age 85 years and

older utilized the Medicare hospice benefit, while progressively smaller percentages of decedents

in younger age groups received hospice care (2021). In 2019, most of days of care were provided

at a private residence followed by nursing facilities and assisted living facilities.

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In the state of Delaware, there are facilities, home hospice care, and in-patient hospice

care. Delaware has only one not-for-profit hospice, Delaware Hospice. Delaware Hospice serves

the state from three offices and has more than 3,000 patients/families annually (Lloyd, n.d.).

Another company to name is Season’s Hospice which is an inpatient hospice facility that rents

out a floor in Christiana Hospital. There are many other hospice/palliative services in Delaware

that offer home care. When a patient is enrolled into palliative or hospice, they can be referred to

hospice/palliative companies based on what their insurance approves.

Preparing for End-of-Life Care

There are many barriers to end-of-life care for everyone involved. For healthcare

workers, not being prepared in all facets, is a huge problem that needs to be addressed. It is fair

to say that providing education on caring for a patient who is nearing the end of their life would

be beneficial not only to the healthcare provider, but to the patient and their family as well. No

one is ever ready for someone to pass and by educating our healthcare workers it may not ever

make it easier, but it may help them feel better equipped to handle the difficult situations. It

would also be beneficial to have healthcare workers attend debriefing meetings following the

passing of a patient. For family, the barriers could also be lack of education, and overall, not

being ready to accept the inevitable of their dying loved one. It can be extremely difficult for a

family member to accept the news that their loved one is going to die, and it is time to think

about palliative or hospice care. It can be helpful to have conversations with your family and

loved ones about end-of-life and how they would like to be treated while they are actively dying.

In the hospital, it is important for nurses to ask our patients about an advance directive or living

will and to provide education if they do not have one. This is an important document that can be

helpful for patients who can no longer speak for themselves. At the end of the day, no one is ever
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truly ready to handle the death of a loved one, nor is someone ready to be told they are going to

die.
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Resources

Centers for Medicare & Medicaid Services. (2022, March 14). Hospice. Centers for Medicare &

Medicaid Services. Retrieved from https://www.cms.gov/Medicare/Medicare-Fee-for-

Service-Payment/Hospice#:~:text=Hospice%20Coverage&text=They%20get%20care

%20from%20a,illness%20runs%20its%20normal%20course

Griffiths, I. (2019, September 13). What are the challenges for nurses when providing end-of-

life care in intensive care units? MAG Online Library . Retrieved from

https://www.magonlinelibrary.com/doi/full/10.12968/bjon.2019.28.16.1047

Lloyd, S. D. (2012, August 6). An Overview of Hospice Care - Delaware. Delaware Hospice.

Retrieved from https://dhss.delaware.gov/dhcc/files/de_hospice0612.pdf

Mayo Clinic Staff. (2020, April 4). End of life: Caring for someone who is dying. Mayo Clinic.

Retrieved from https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/

cancer/art-20047600#:~:text=Hospice%20care%20is%20a%20service,at%20the%20end

%20of%20life.

National Hospice and Palliative Care Organization. (2021). NHPCO Facts and Figures. 2021

Edition: Hospice Facts and Figures. Retrieved from

https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2021-edition.ppt

U.S. Department of Health and Human Services. (2021, December 17). Providing care and

comfort at the end of life. National Institute on Aging. Retrieved from

https://www.nia.nih.gov/health/providing-comfort-end-life#what

U.S. Department of Health and Human Services. (2021, May 14). What Are Palliative Care and

Hospice Care? National Institute on Aging. Retrieved from

https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care
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Woo, J. A., Maytal, G., & Stern, T. A. (2006). Clinical Challenges to the Delivery of End-of-

Life Care. Primary Care Companion to the Journal of Clinical Psychiatry. Retrieved from

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1764519/#:~:text=These%20challenges

%20include%20physical%20pain,care%20of%20the%20terminally%20ill.