Critical Access Hospital Nurses' Perceptions of Obstacles to End-of-Life Care

A Qualitative Study

Renea L. Beckstrand, PhD, RN, CCRN, CNE; Janelle L. B. Macintosh, PhD, RN; Jeanette Drake, PhD, RN, ACNP-BC; Con Newman, MS, RN; Ryan Rasmussen, PhD, RN, FNP-C; Karlen E. Luthy, DNP, FNP-C

Disclosures

Abstract and Introduction

Abstract

Background: Critical care nurses working in urban settings have reported obstacles in caring for dying patients. However, the perceptions of such obstacles by nurses working in critical access hospitals (CAHs), which are located in rural areas, are unknown.

Objective: To study stories and experiences related to obstacles in providing end-of-life care reported by CAH nurses.

Methods: This exploratory, cross-sectional study presents the qualitative stories and experiences of nurses working in CAHs as reported on a questionnaire. Quantitative data have been previously reported.

Results: Sixty-four CAH nurses provided 95 categorizable responses. Two major categories emerged: (1) family, physician, and ancillary staff issues and (2) nursing, environment, protocol, and miscellaneous issues. Issues with family behaviors were families' insistence on futile care, intrafamily disagreement about do-not-resuscitate and do-not-intubate orders, issues with out-of-town family members, and family members' desire to hasten the patient's death. Issues with physician behaviors were providing false hope, dishonest communication, continuation of futile treatments, and not ordering pain medications. Nursing-related issues were not having enough time to provide end-of-life care, already knowing the patient or family, and compassion for the dying patient and the family.

Conclusion: Family issues and physician behaviors are common obstacles in rural nurses' provision of end-of-life care. Education of family members on end-of-life care is challenging because it is most families' first experience with intensive care unit terminology and technology. Further research on end-of-life care in CAHs is needed.

Introduction

In the United States, more than 5 million critically ill patients are admitted annually to intensive care units (ICUs) for continuous assessment and invasive monitoring; support of breathing, airway, or circulation; or stabilization of life-threatening or acute medical or traumatic conditions.1 Although admission to these units is designed to extend life, overall mortality rates for patients in adult ICUs average 10% to 29%.^[1]

High mortality rates necessitate end-of-life (EOL) care, which is common in ICUs and is provided primarily by critical care nurses (CCNs).^[2–4] Research has been conducted in urban settings on EOL care for ICU patients, including nurses' perceptions of obstacles and helpful behaviors.^[2–7] However, it is unclear whether those same perceptions are shared by nurses working in rural communities at critical access hospitals (CAHs), where the demands of nursing practice can differ greatly from those in more urban facilities.^[8]

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Table 1. Responses from nurses about obstacles to end-of-life care: 2 main themes and the issues they encompass ^a
Family, physician, and ancillary staff issues (n = 60)	Nursing, environment, protocol, and miscellaneous issues (n = 35)
1. Issues with family behaviors (n = 33) A. Families who insist on futile care B. Families who disagree about do-not-resuscitate orders C. Issues with out-of-town family members D. Families who want to hasten death 2. Issues with physician behaviors (n = 18) A. Physicians providing false hope B. Physician communication not honest C. Physicians who continue futile treatments D. Physicians who do not order pain medications for dying patients 3. Lack of ancillary staff (social workers, chaplains, and secretarial support staff) (n = 9)	1. Issues related to nursing (n = 20) A. Nurse not having enough time to provide end-of-life care B. Nurse knows the patient/family C. Compassion for the dying patient and the patient's family 2. Environmental issues (n = 4) 3. Lack of end-of-life protocols (n = 3) 4. Miscellaneous (n = 8)

^aTwelve individual responses were unusable because the comment was not about end-of-life obstacles, was related to an event or experience that occurred before the nurse worked as a registered nurse, or was not categorizable; these responses were therefore not included.

Table 2. Examples of nurses' responses describing obstacles to end-of-life care, by theme ^a
Issue	Example
	Family, physician, and ancillary staff (n = 60)
1. Issues with family behaviours (n = 33) A. Families who insist on futile care B. Families who disagree about do-not-resuscitate orders C. Issues with out-of-town family members D. Families who want to hasten death	"My biggest challenge is performing invasive procedures on demented patients who have very clear do-not-resuscitate/do-not-intubate orders, but their proxy changes their mind and wants to take all measures. I remember having to help put a midline in an 80+-year-old demented lady who couldn't hear what we were trying to explain anyway. She was traumatized, I was traumatized for her, and her shoulder was hurt in the process. Her do-not-resuscitate/do-not-intubate specified no invasive lines and no antibiotics, but her proxy said that he wanted it 'all' done after being given several choices by the doctor." "Recently cared for a 40-year-old man with end-stage colon cancer with metastases to bone, lung, and liver. His family disagreed on plan of care (treatment and hospice). The patient, not wanting to upset the family, could not share his wishes. The family were in disagreement about everything. Police were called by the patient's wife, which got administration involved. The patient spent his entire admission up until 2 hours before his death experiencing shortness of breath (even with interventions), nausea and vomiting, weakness, and extreme pain. He died when all family had left. [The nurse] and administration forced to deal with the anger from the family. [All of this] took away from the patient's care at the end of life." "Patient stated he was DNR [do not resuscitate]. Daughter was able to produce signed document, which staff copied [for the record]. [His] spouse did not agree [with the DNR choice]." "Emergency room patients [who are critically ill] are more difficult because it is unexpected. Some [of these patients] are traveling through, so family is not always present [as the patient is dying.]" "Families who want you to push more morphine so the patient will die faster. I am not Kevorkian."
2. Issues with physician behaviours (n = 18) Physicians giving false hope, not being honest, or continuing futile treatments	"I am frustrated by providers who won't order a palliative consult (not hospice—they do a better job). Many providers still equate palliative and hospice care. My most recent example was a woman in her late 50s bed bound for at least 10 years after a cerebrovascular accident. She had history of gastric bypass surgery with subsequent poor nutrition. She was emaciated and edematous from low protein stores. Moving was painful due to arthritis and peripheral neuropathy. Now she has developed severe aortic stenosis, which caused respiratory failure requiring mechanical ventilation. I cared for her after she was extubated. Her caregiver and power-of-attorney sister was curious about valve replacement. A cardiac surgeon said she would have to be in a better nutritional state before surgery would be considered. A gastroenterologist declined to place a percutaneous endoscopic gastrostomy tube due to her history of extensive gastric bypass. The patient deferred decision-making to her sister, who understood that valve surgery probably wouldn't happen and requested palliative care. The provider declined to order it, saying it was 'too soon.'" "Physicians that become attached to patients who haven't improved over the course of more than a week with varying treatment options and still hold out hope the patient will recover, continue to encourage family to remain positive and look toward recovery when the patient is uncomfortable and can't receive meds to decrease discomfort/pain because the physician doesn't accept a terminal diagnosis."
3. Lack of ancillary staff (social workers, chaplains, and secretarial support staff (n = 9)	"The nurse who cared for the dying patient is most often left to deal with all the post-death paperwork and arrangements while at the same time trying to tend to the grieving family. In small hospitals, the same nurse may have to return to other patients' care/needs while doing after-death work and tending to the grieving family."
	Nursing, environment, protocol, and miscellaneous^a (n = 35)
1. Nursing-related issues (n = 20) A. Nurse not having enough time to provide end-of-life care (lack of staffing) B. Nurse knows the dying patient and family C. Compassion for the dying patient and family	"Being understaffed makes it hard to give 'as-needed' medications to comfort care patients when you have 5 other patients and patients with end-of-life care require turning and cleaning and medication almost hourly. It was hard to give 100% of the care that person deserved because there wasn't enough help with the other patients." "I remember having a dying patient in my care who needed a lot of frequent small interventions like pain medication boluses, repositioning, mouth swabs, incontinence care, etc. At the same time, I was asked to quickly discharge my other patient and prepare for an emergent admission from the operating room. This took time, of course, and then the patient from the operating room was a train wreck, and I was completely flat out with that patient and ignoring my dying patient. I asked for help from the nursing supervisor (because my fellow intensive care nurse was also super busy and could not help me, there's only 2 of us in our 4-bed unit). Eventually the supervisor got us a licensed nurse assistant to assist, but that only helped somewhat. I felt so guilty that I had to sort of drop the ball with my dying patient and I felt like my relationship with the family in the room was also ruptured. The licensed nurse assistant was able to take care of a lot of the basic needs of the dying patient while I was occupied by the patient from the operating room, but it wasn't sufficient. I had felt very good about the care I had been giving to the dying patient up until that point, but after my busy admission it all went to hell. The patient died while I was tied up with the other room, and the licensed nurse assistant had to comfort the family." "The community is very close in rural areas. Most people have known each other since birth. As a 'new' person moving here, I [do not] know or am not familiar with anyone nor do I have a 'history' here. Families are mostly appreciative of staff and nurses. At times, the closeness of the people who are caring for a patient can impede care. MDs/NPs/RNs [physicians, nurse practitioners, and registered nurses] can have a difficult time making decisions to move on to end-of-life care because of the tight-knit community way of life." "We had a middle-aged woman with brain cancer—she had been doing treatment out of state and was no longer responding to it. She was having almost constant impulsive behaviors. Family was present but didn't really know how to handle the behaviors; they were getting exhausted. Patient really needed one-on-one care, and we were not staffed to handle that. Patient was being medicated as needed for pain, anxiety, and restlessness. Patient went downhill fast during one night after receiving multiple medications per her family's request, even though they were informed of the possible effects. I knew this family as they were from the same small town as me. I had also lost my mother to cancer at about the same age. I feel [my knowledge of the loss of my mother] was beneficial to them but very hard for me. I tried to be very professional but was near tears often when caring for her and her family. Trying to talk to them about what could be happening and what to expect. She passed peacefully, with family present, much sooner than we all anticipated."
2. Environment (n = 4)	"We have a 6-bed ICU; once our patients are "comfort care" only, they are transferred to med-surg. This is very upsetting to the continuum of care and causes undue stress for the patient and family. Our nurse manager and director of nursing feel that this should not cause any disruption in care. My end-stage colon cancer patient could not continue with her intravenous fentanyl due to being on med-surg. Patient did not have optimal pain relief. Another was only allowed morphine intravenously but their Ativan was not allowed because it could cause respiratory depression along with morphine. Gratefully, a new hospitalist came on the next day and Ativan was ordered."
3. Lack of end-of-life protocols (n = 3)	"Having a protocol or order set for end-of-life patients helps immensely!"
4. Miscellaneous (n = 8)	"The small-town life is beautiful, but it has drawbacks. Religiously speaking, lack of education on end-of-life can hinder [care] as well."

Table 3. Demographics of responding nurses from critical access hospitals (n = 64)
Characteristic	N	Mean	SD	Range
Age, y	61	45.8	14.2	22–68
Years as a registered nurse	64	18.0	14.2	1–44
Hours worked per week	60	34.4	11.9	4–80
Years caring for critically ill/dying patients	61	16.8	13.4	1–47
Number of beds in hospital	53	14.6	10.7	0–35
Characteristic	No. (%)
CCRN certification
Ever certified
Yes	9 (14)
No	53 (83)
Did not report	2 (3)
Currently certified
Yes	6 (9)
No	21 (33)
Did not report	37 (58)
Total No. of dying patients cared for
>30	32 (50)
21–30	5 (8)
11–20	14 (22)
5–10	5 (8)
<5	4 (6)
Did not report	4 (6)
Highest academic degree achieved
Diploma	2 (3)
Associate	26 (41)
Bachelor's	34 (53)
Master's	1 (2)
Other (did not specify)	1 (2)
Position held at facility
Direct care/staff nurse	30 (47)
Charge/staff nurse	20 (31)
House supervisor	4 (6)
Other (float, oncology, etc)	10 (16)
Type of facility
Community hospital; nonprofit	42 (66)
Community hospital; profit	11 (17)
County hospital	9 (14)
Other	1 (2)
Did not report	1 (2)