Lai et al.

BMC Palliative Care (2018) 17:116

https://doi.org/10.1186/s12904-018-0372-7

RESEARCH ARTICLE Open Access

The experience of caring for patients at the

end-of-life stage in non-palliative care
settings: a qualitative study
Xiao Bin Lai1*, Frances Kam Yuet Wong2 and Shirley Siu Yin Ching2

Abstract
Background: More patients are dying in non-palliative care settings than in palliative care settings. How health care
providers care for adult patients at the end-of-life stage in non-palliative care settings has not been adequately explored.
The aim of this study was to explore the experiences of health care providers in caring for patients at the end-of-life stage
in non-palliative care settings.
Methods: This is a qualitative study. Twenty-six health care providers from eight health care institutions which are based
in Shanghai were interviewed individually between August 2016 and February 2017. Three levels of health care, i.e., acute
care, sub-acute care, or primary care, was provided in the health care institutions. The interviews were analyzed using
qualitative content analysis.
Results: Three themes emerged from the interviews: (i) Definition of the end-of-life stage: This is mainly defined based on
a change in treatment. (ii) Health care at the end-of-life stage: Most patients spent their last weeks in tertiary/secondary
hospitals, transferring from one location to another and receiving disease- and symptom-focused treatment.
Family-dominated decision making was common when discussing treatment options. Nurses instinctively provided
extra care attention to patients, but nursing care is still task-oriented. (iii) Challenges, difficulties, and the future. From
the interviews, it was found that pressure from families was the main challenge faced by health care providers. Three
urgent tasks before the end-of-life care can become widely available in the future were identified from the interviews,
including educating the public on death, extending government support, and creating better health care environment.
Conclusion: The end-of-life care system of the future should involve health care institutions at all levels, with
established mechanisms of collaboration between institutions. Care should be delivered to patients with various life-
threatening diseases in both palliative and non-palliative care settings. But first, it is necessary to address the obstacles
to the development of end-of-life care, which involve health care providers, patients and their families, and the health
care system as a whole.
Keywords: End-of-life care, Health care delivery, Qualitative research, Life-threatening diseases

Background care [3]. All countries should take heed of the increasing
End-of-life care is that part of palliative care that focuses need for end-of-life care [4].
on patients who have life-threatening diseases and a life Patients with life-threatening diseases at the end-of-life
expectancy of 6 to 12 months [1, 2]. It helps patients to stage suffer multiple physical discomforts [5, 6], as well as
die in peace, comfort, and dignity [1]. Globally, the esti- a range of psychosocial and spiritual concerns [7–12].
mated number of people in need of end-of-life care is With the progression of their diseases, the utilization of
20.4 million [1]. By 2040, an estimated 75% to 88% of pa- health services by patients increases at the end-of-life
tients at the end-of-life stage could benefit from palliative stage [13–19]. As a result, worldwide, a significantly large
number of patients with chronic diseases (20–78%) die in
* Correspondence: xblai@fudan.edu.cn
acute care hospitals [20–22]. Yet acute care hospitals may
1
School of Nursing, Fudan University, Shanghai, China not have specialized palliative care or hospice care wards.
Full list of author information is available at the end of the article

© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Lai et al. BMC Palliative Care (2018) 17:116 Page 2 of 11

With the huge number of patients at the end-of-life stage, [1]. Hence, as part of palliative care, it is necessary to de-
more patients are dying in non- palliative care settings velop and improve end-of-life care in non-palliative care
than in specialized hospice care wards in hospitals or hos- settings.
pice facilities [23, 24]. A nation-wide survey conducted in Patients at the end of their life and living in non-palliative
the United Kingdom (UK) reported that only 6% of those care settings may not be receiving care appropriate for their
who passed away died in hospice facilities [25]. stage of illness [38, 39]. A review article found that the man-
The situation in China is consistent with the international agement of symptoms for dying patients was not adequate
trend. The health care system in China has been undergoing in many hospitals [39]. In the UK, nearly one-third (31%) of
reform for years. During the previous reform period (from the bereaved families were not satisfied with the care that
the early 1980s to the 2000s), China dismantled the coun- was provided in the hospital where a family member was a
try’s effective health care and public health system, which patient during the last 3 months of his/her life [25]. By com-
caused much turmoil years later [26]. One of the negative parison, the proportion of bereaved families who were dis-
outcomes of this move has been the decentralization of the satisfied with the care provided in hospice facilities, in their
public health system, which has led to great disparities own home, and in care homes was 21%, 21%, and 18%, re-
between rural and urban health care service [26]. Patients spectively [25]. Studies conducted in the United States (US),
tend to bypass local health care institutions to seek care in the UK, and the Netherlands found that the quality of dying
the larger acute care hospitals in urban areas, even for rela- and death in hospitals is not satisfactory [25, 40, 41]. Thus,
tively minor problems. As of the year 2017, there were how to enhance the end-of-life care in various clinical set-
989,000 health care institutions in China, of which 30,000 tings is a challenge faced by health care professionals.
were hospitals and 934,000 were primary health care institu- Identifying gaps in service is a prerequisite to developing
tions [27]. That same year, there were a total of 660 million end-of-life care in non-palliative care settings. It is essen-
health care visits in China, of which, 280 million were to tial to know how patients at the end-of-life stage are cared
hospitals, 360 million to primary health care institutions for in hospitals from the perspectives of both health
[28]. The hospitals have been overused for years. care providers and health care recipients. In the study
Patients with chronic diseases usually go to large acute by McIlvennan et al., the families felt that the hospice
care hospitals to seek help. When their condition deteri- care provided to patients with a left ventricular assistance
orates, patients will stay in a hospital until they passed device was fragmented [42]. Peacock et al. reported that
away. Previous studies found that more than half of pa- the family caregivers of dementia patients thought that
tients at the end-of-life stage in Beijing, Shanghai, and physicians specializing in treating dementia patients did
Guangdong died in an acute care hospital [29–31]. Hospice not seem like the idea of end-of-life care [43]. A recent
care in China has developed rapidly since the announcement review article suggested that a holistic approach be taken
of several national policies on end-of-life care in 2015 [32– to providing end-of-life care to patients [44].
34]. Yet the care provided to dying patients is far from satis- Patients at the end-of-life stage and their family caregivers
faction. According to the 2015 Quality of Death Index re- have unmet needs in multiple domains. Mathews and
port, mainland China ranked 71st out 80 countries and areas Johnston identified the unmet needs of people with chronic
in its quality of death [35]. Before the wide introduction of obstructive pulmonary disease (COPD) and their caregivers
the concept of hospice care, only 1% of patients at the end- as being in the physical, psychosocial and spiritual domains
of-life stage in China received hospice care [36]. The rate of [45]. Of particular importance are appropriate and timely
utilizations of hospice care services is currently still low. In conversations to identify the personal preferences of patients
Shanghai, for example, a community-based hospice service at the end of their life and to provide relevant information
was established with a great deal of support from the govern- on COPD [45]. The need for better communication with
ment, and the utilization of hospice beds was 43.8% [37]. health care providers was also reported in another study
However, only 11.8% of patients at the end-of-life stage died [46]. Spending time and discussing important issues with
in hospice wards in the community [37]. patients have also been identified as family’s needs [8, 47].
In the face of the increasing need for palliative care, the Clark et al. [8] found that family members with a relative
World Health Organization and the Worldwide Palliative who had died in an acute medical ward wished that they
Care Alliance proposed that palliative care be delivered at all had been able to spend more time with the patient and
levels of care: (i) by all health care providers through a “pal- address issues before he/she passed away. Mossin and Land-
liative care approach”; (ii) by primary health care providers mark’s study [47] also found that families wanted to spend
and those treating patients with life-threatening diseases, time with patients. The necessity of communicating with pa-
who would provide “general palliative care” and; (iii) by spe- tients about death and important issues is echoed in another
cialized teams treating patients with complex problems, study on family members [48]. Family members also need
who would provide “specialist palliative care” [1]. Palliative more information and good support from health care pro-
care should be provided wherever a person’s care takes place viders, and good symptom management for patients [8].
Lai et al. BMC Palliative Care (2018) 17:116 Page 3 of 11

Compared with the research that has been conducted on advertisement was sent out via WeChat, the biggest social
family caregivers, how health care providers care for adult media application in China [52], with 963 million users in
patients at the end-of-life stage, especially in non-palliative the country [53]. The advertisement of this project was
care settings, has not been adequately explored. Garner et sent to people on WeChat who were acquaintances of the
al. [49] found that, from the perspective of nurse executives, first author (X.B.L.). It was estimated that more than 300
inadequate communication, lack of education, and hospital people saw the advertisement. Eligible health care pro-
system constraints were three major barriers to providing viders were introduced to the first author (X.B.L.) by
end-of-life care in hospital settings. Another study found friends and colleagues if they expressed an interest in the
that, nurses considered it a challenge to provide end-of-life research topic. X.B.L. then sent the information sheet to
care in the complex and difficult environment of the med- the eligible health care providers at least one week before
ical units [50]. In their study, Gardiner et al. discovered that the interviews. Any concerns were answered immediately.
attitudinal differences to the care, a focus on curative treat- The interviews were confirmed after the health care pro-
ments, and a lack of resources were the main barriers to viders agreed to participate. The consent form was signed
providing palliative care for older people in acute care hos- on the day of the interview after the participant was given
pitals [51]. These studies explored the experiences of nurses a face-to-face introduction to the study.
in caring for patients at the end-of-life stage. Few studies
have presented a comprehensive picture of how patients at
Data collection
the end-of-life stage are cared for in hospitals from the per-
The data were collected between August 2016 and
spective of both physicians and nurses. Therefore, in this
February 2017. Semi-structured individual interviews
study the following research question was put forward:
were conducted by X.B.L. using an interview guide (see
What have been the experiences of health care providers in
Table 1) in quiet rooms in the wards. Each participant was
caring for patients at the end-of-life stage in non-palliative
interviewed once. A minor revision was made to the inter-
care settings?
view guide after it was pilot tested in two interviews that
were not included in the data analysis. The interviewer is
Methods
an academic staff member with a PhD, who has a great
Aims
deal of experience in conducting interviews. All of the in-
The aim of the study was to explore the experiences of
terviews were audio taped and averaged 41 min in length.
health care providers in caring for patients at the end-
Participant recruitment was stopped when data saturation
of-life stage in non-palliative care settings.
was achieved [54]. Data saturation was determined using
the criterion of “informational redundancy” proposed by
Design
Grady and Sandelowski [55, 56]. When the researcher
The experiences being examined in this study came from
began to hear the same comments again and again in the
the health care providers’ engagement in the health care sys-
interviews, data saturation was reached.
tem and their social interactions with patients and their fam-
ilies. The answer to the research question emerged through
the dialogues that took place between the researcher and Ethical considerations
the participants. Hence, we aligned ourselves with an inter- Ethical approval was obtained from the ethics committee
pretivist perspective. Data were collected through interviews of the university in which the first author works before
and analyzed using qualitative content analysis. the study began (Reference number: IRB#2017-10-1). The
informants were assured that their participation was vol-
Participants untary and confidential. Each participant was identified by
The criteria for the inclusion of participants were: (a) be- a research number. All of the participants signed the con-
ing a physician or a nurse working in a health care institu- sent form before the interviews were conducted.
tion in Shanghai, where in a tertiary hospital (i.e., an acute
care hospital), a secondary hospital (i.e., a sub-acute care Table 1 Interview Guide
hospital), or community health care center; (b) working in Interview questions
an internal medicine ward, intensive care unit (ICU), or 1. Please enlighten me on the trajectory of disease(s) in your specialty.
acute and emergency department (AED); and (c) having From your point of view, how would you define the end-of-life stage
of the disease?
cared for adult patients at the end-of-life stage during
the past two years. The patients were those with cancer 2. What kinds of treatment/care have you provided to patients at this
stage?
or a non-cancer chronic disease. Physicians or nurses
3. What challenges/difficulties have you experienced when caring for
who worked in palliative care units were excluded. such patients?
Purposive sampling was adopted to ensure that partici-
4. From your point of view, how should these patients be cared for?
pants working in various wards could be interviewed. An
Lai et al. BMC Palliative Care (2018) 17:116 Page 4 of 11

Data analyses Table 2 Demographics of the Participants

The interviews were transcribed verbatim in Mandarin. Physician Nurse
A transcript was sent to one participant to check against (N = 13) (N = 13)
with the audio record for accuracy. The transcripts were Age (Mean [SD]) 39.00 (9.28) 37.15 (4.34)
then imported into NVivo software [57] and analyzed Gender (n [%])
using qualitative content analysis [58]. The analytic steps Female 5 (38.5) 13 (100)
included: (a) thoroughly reading the transcripts; (b) divid-
Education (n [%])
ing the interviews into content areas according to the
Tertiary school 5 (38.5) 12 (92.3)
interview questions; (c) extracting and condensing mean-
ing units; (d) abstracting and labeling a code; (e) sorting Master’s degree 5 (38.5) 1 (7.7)
the codes into categories; and (f) creating sub-themes/ Doctoral degree 3 (23.0) 0 (0)
themes [58]. The data were mainly coded by the first Religion (n [%])
author and reviewed by the other two authors. The ana- Buddhist 3 (23.0) 1 (7.7)
lytic results were discussed by all three authors.
None 10 (76.9) 12 (92.3)
Marital status (n [%])
Rigor
The rigor of a study refers to its credibility, transferability, Married 12 (92.3) 12 (92.3)
dependability, and conformability [59]. Health care providers Divorced 1 (7.7) 0 (0)
in different specialties at several institutions were inter- Single 0 (0) 1 (7.7)
viewed as a way of triangulating sources of data [60]. In each Working since graduation (year) 10 (5–37) 17 (4–25)
ward, one physician and one nurse were interviewed. Tri- (Median [range])
angulation through multiple analyses was also performed Working in this specialty (year) 10 (0.2–19) 11 (1–16)
[60]. The three researchers, all academic staff members, (Median [range])
reviewed the data set independently, held group discussions Level of health care institution (n [%])
on the findings, addressed the differences in their views, and Tertiary hospital 7 (53.8) 6 (46.2)
finally arrived at a consensus. One participant reviewed the
Secondary hospital 4 (30.8) 5 (38.5)
findings as another approach to analytical triangulation [60].
Community health care center 2 (15.4) 2 (15.4)
Verbatim quotations were provided to boost the transfer-
ability and credibility of the study [59]. A personal journal Specialty (n [%])
was kept to record the researcher’s thoughts, including the AED 4 (30.8) 3 (23.1)
frustrations, challenges, and highlights that were encoun- ICU 1 (7.7) 1 (7.7)
tered while conducting the study [61]. Cardiology department 2 (15.4) 2 (15.4)
Pulmonary department 0 (0) 2 (15.4)
Results
Gastroenterology department 1 (7.7) 0 (0)
Twenty-six health care providers from eight institutions
were approached. All agreed to participate. Their Hepatology department 1 (7.7) 1 (7.7)
demographic characteristics are listed in Table 2. Three Nephrology department 2 (15.4) 2 (15.4)
themes emerged from the interviews: (i) Definition of General practice 2 (15.4) 2 (15.4)
the end-of-life stage; (ii) Health care at the end-of-life Diagnoses of patients cared for by Total (n = 26)
stage; (iii) Challenges, difficulties, and the future. An the participants (n [%])
illustration of the coding process has been included as Cancer 22 (84.6)
Additional file 1. Cardiovascular disease 22 (84.6)
Diabetes 11 (42.3)
Definition of the end-of-life stage
Chronic obstructive pulmonary disease 12 (46.2)
The participants defined the end-of-life stage of a person
who has a chronic disease mainly in terms of a change Renal failure 16 (61.5)
in treatment. Cirrhosis 11 (42.3)
Dementia 5 (19.2)
“A patient could be described as being at the end-of- Parkinson’s disease 7 (16.9)
life stage if he/she needs intravenous drugs to maintain
Multiple sclerosis 2 (7.7)
(his/her physical status).” (Physician 15, cardiology)

Some few criteria for the end-of-life stage of those

with specific diseases were also mentioned, including
Lai et al. BMC Palliative Care (2018) 17:116 Page 5 of 11

increased hospital admissions (Nurse 8, pulmonary), be- Spending one’s last days in a hospital was common,
ing bed-bound all day (Nurse 10, cardiology), and having but it was not a good way to die. The patients usually
a Creatinine level over 400 (Physician 16, nephrology). underwent worthless treatments. In a way, it was a waste
They stated that the duration of the end-of-life stage var- of health care resources, because other patients who
ies from days to months, and is unpredictable. truly needed high-level treatment and highly technical
facilities could not be admitted, due to the presence of
Health care at the end-of-life stage these patients.
Hospitalization: Drifting in the health care system
The need for hospitalization increases at the end-of-life “For the patients, it was worthless.” (Physician 8,
stage. Some patients were directly admitted to a ward. cardiology)
More patients stayed in the AED of a tertiary/secondary
hospital. From there, some patients were then transferred “For the tertiary hospitals, it was a waste of health
to a ward. The others remained in the AED until the end. care resources.” (Physician 1, hepatology)

“If a patient does not die soon, we will try to

transfer him/her to a ward for further treatment.” Physiologically focused and excessive treatment
(Physician 2, AED) Treatment at the end-of-life stage may continue to focus
on the primary disease. As the disease progresses, attention
Local medical insurance policies allow patients to stay turns to the symptoms and complications of the disease, is
in a tertiary hospital for 7 days, or in a secondary hos- described as “conservative” or “symptom-focused” treat-
pital for 21 days. This amount of time is insufficient for ment. Both kinds of treatments may continue until the end.
patients at this stage, so they are transferred from one
location to another. The transfers can be arranged to “We usually provide symptom-focused treatment,
take place within the same hospital or among hospitals. which is the main treatment in the last few days.”
(Physician 12, AED)
“After a patient stays in a ward for three weeks, we
can arrange a self-financed re-admission. This means Another change in treatment occurs after the patient is
that the patient continues to stay in the ward, but pay judged to be dying. Several treatments are used during the
all expenses by themselves for one week. After they can dying phase. In some wards, many drugs, including life-sus-
use their medical insurance again, we discharge and taining drugs, nutrition supplements, antibiotics, and even
re-admit the patient again. All of the administrative organ protective drugs, are used. Oxygen therapy and vital
procedures are done in the hospital information sign monitoring also continued to be delivered too. Only
system. The patient stays in our ward throughout two participants mentioned the application of minimal
this period.” (Nurse 3, pulmonary) treatment.

Regardless of which of the above arrangement is made, “I can only control the pain and prescribe oxygen
such transfers brought suffering to patients and their therapy. Other treatments (i.e., life-sustaining drugs,
families. antibiotics, resuscitation equipment, etc.) are unavail-
able here.” (Physician 10, community)
“The patients had to keep moving. It was really
painful for the patients and their families.” The physicians acknowledged the patients’ psychological
(Physician 1, hepatology) needs, but could not do more.

In the end, apart from a small number of patients who “It is difficult to address this (psychological) area
died in community health care centers or at home, most pa- because of China’s health care system, or the doctors’
tients died in tertiary/secondary hospitals, especially in AEDs. energy.” (Physician 8, cardiology)
However AEDs were not a good place in which to die.

“Eight to nine hundred patients died in our AED each Roles of patients and families in making treatment decisions
year, the majority was patients with a chronic disease. Few participants had heard about advanced directives.
We usually have more than 100 patients stay in the AED After judging a patient’s prognosis to be poor, the phys-
hall. Most are dying. They lie on trolleys. There are no ician would initiate a conversation with the family to dis-
curtains between the trolleys. They spend their last days cuss future treatment. The essence of the conversation
in a place like a refugee camp.” (Physician 12, AED) was to decide on whether to use invasive treatments and
Lai et al. BMC Palliative Care (2018) 17:116 Page 6 of 11

procedures. It was assumed that other treatments would resuscitation (CPR) to keep the patient alive in order to
continue to be delivered, but that they could be changed wait for all family members to come.” (Physician 10,
if the family proposed a change. community)

“Others, such as intravenous medications or nutritional

support, would usually not be discussed, unless the Instinctively enhanced nursing care
family proposed it.” (Physician 5, nephrology) Although nurses were seldom involved in judging the
end-of-life stage or dying phase, they instinctively pro-
In most cases, the family made the decisions without vided more care to patients at the end-of-life stage.
the patient’s participation. The family’s decision was in-
fluenced by many factors, such as the financial burden “I can only try my best. If the environment in the
of the treatment, the perception of the patient’s clinical room is not good, I try to keep the room clean and
condition, age, societal norms, and so on. tidy, and more comfortable, and to keep extraneous
people out of the room.” (Nurse 13, AED)
“Some families continued treatment under the
pressure of social judgment. They did not want to be They made necessary adjustments on administration,
blamed.” (Physician 14, ICU) caring for patients at a higher level of nursing care. For
example, one nurse said, “We would pay extra attention
Only in a few special cases did the patients make their to their basic nursing care” (Nurse 1, hepatology). An-
own decisions. other nurse said, “We would have more intensive sur-
veillance on them” (Nurse 3, pulmonary). Meanwhile,
“We had (such a case) before. It was a young patient they tried to provide psychological support.
with cancer, who was able to communicate and had
some medical knowledge. Only with such a patient “I would hold the patient’s hand if the patient was
could we have such a discussion (about the conscious. I think it was a comfort for him/her.”
treatment).” (Physician 3, AED) (Nurse 8, pulmonary)

The physicians seldom discussed the patient’s treatment Only one community nurse claimed that some basic
and prognosis with the patients themselves. Although pa- nursing care procedures were no longer followed when
tients sometimes spoke of giving up (i.e., terminating treat- the patient was dying, in order to minimize disturbance
ment), it was the decisions of their family that was finally to the patient. Nursing care after death was quite
followed. Under the circumstance of family-dominated de- procedure-related. None of the participants mentioned
cision making, a patient’s real wish could hardly be known. the provision of bereavement support.

“Definitely the doctors discuss it [treatment] with the Challenges, difficulties, and the future
families. We are not sure whether the families previously Great pressure from families
discuss it with the patients.” (Nurse 1, hepatology) The greatest challenge came from the families of the
patients. Some families did not accept their loved one’s
More than half of the families decided to terminate ac- condition.
tive treatment, while others chose resuscitation.
“The biggest challenge is the unwillingness of the
“Most gave up at last.” (Physician 15, cardiology) family to accept the patient’s condition. Some people
had quarreled with us. At that time, my work became
Efforts to keep the patient alive occurred when the very difficult.” (Physician 5, nephrology)
family had not yet decided what to do or when the fam-
ily insisted on resuscitation. In a few cases, the patient Sometimes, the physicians had to repeatedly explain a
was kept alive to give all members of the family time to patient’s condition to his/her family. Some families con-
arrive to “see the patient for one last time.” Such resusci- tacted physicians with their personal interests in mind.
tation only brought suffering to the patient, and con- The physicians had to deal carefully with these compli-
sumed resources unnecessarily. cated families.

“We encountered such a situation. The family decided “Some families were involved in their own interests
to give up. Then, the patient’s condition worsened at when discussing the treatment plan. For example,
night. We used drugs and carried out cardiopulmonary they wanted to inherit the patient’s apartment. These
Lai et al. BMC Palliative Care (2018) 17:116 Page 7 of 11

kinds of families were very difficult to communicate Urgent tasks in the future
with.” (Physician 14, ICU) The participants believed that some essential tasks need
to be completed before local end-of-life care is developed
Meanwhile, the nurses’ work became difficult because in the future. The most important and repeatedly men-
many families expressed mistrust, showed poor cooper- tioned task, was educating the public on death, so that
ation and a lack of understanding, and made unreason- they would have the proper attitude towards it.
able demands.
“I think it is the attitude towards death. The society
“The biggest challenge was the poor cooperation of the holds an attitude of avoidance towards death. Many
family. Last time, there was an elderly patient. We Chinese cancer patients did not know their diagnosis
suggested that the family spend more time with the patient. until they died. They did not have the chance to
But the family said,‘You should take care of him since he is realize their wishes.” (Physician 14, ICU)
in the hospital’. Then they left.” (Nurse 10, cardiology)
Meanwhile, the participants thought that government
Despite the participants' efforts, some families insisted support was ultimately essential to develop local end-of-life
on aggressive treatment. Worse, conflict and violence care. Creating a better health care environment was an-
sometimes occurred after the patients died. other important but challenging task.

“There was a patient who died suddenly. The family “There are too many conflicts between patients and
thought the treatment was delayed because of us. health care providers. We become exceptionally self-
They could not accept this and smashed things in the protective and careful when caring for dying patients. It
ward everywhere.” (Nurse 2, AED) causes great stress. I hope the environment can improve.”
(Nurse 16, nephrology)

Practical difficulties in the delivery of care

Several difficulties in the delivery of care were also men- End-of-life care model in the future
tioned. A common difficulty was how to transfer In terms of how patients at the end-of-life stage would
patients out of a tertiary/secondary hospital after best be cared for in the future, some participants stated
stabilization. Due to the lack of an effective referral that patients would be better cared for in non-palliative
system among health care institutions, physicians did care settings, and that end-of-life care should be inte-
not know where to place the patients. grated into routine work.

“We don’t collaborate with nearby hospitals at lower “I think patients in tertiary hospitals still need this
levels. Therefore, it is difficult for us to transfer our service. We may have one or two health care
patients out.” (Physician 2, AED) providers in each ward to deliver the care after
training.” (Physician 1, hepatology)
The physicians also felt that it was a challenge to com-
fort patients who did not know their real condition. Others thought that patients should be cared for in
specialized end-of-life units in health care institutions at
“The family usually requests us to not tell the patient all levels. A few suggested that patients should be cared
the truth. So it becomes very difficult to comfort the for at home. Regardless of the car model, there is a long
patient when his/her condition is deteriorating.” road ahead in developing local end-of-life care service.
(Physician 1, hepatology)
Discussion
For the nurses, the difficulties included an increased This study describes how health care providers in non-
workload, great stress during the night shift, skill-related palliative care settings care for patients with life-threat-
difficulties, and feeling powerless to solve family ening diseases at the end-of-life stage. The findings indicate
conflicts. A lack of effective interventions to manage a lack of general end-of-life care in non-palliative care set-
symptoms or problems was another difficulty faced by tings in Shanghai. Although symptom management is prac-
the participants. ticed to certain extent, aggressive disease management, the
overuse of medication in the last 48 h, and visits to emer-
“The biggest difficulty was that some of their suffering gency rooms are common, especially among patients with
could not be solved with my ability and skills” (Nurse non-cancer chronic diseases [62–65]. The nursing care in
13, AED) this study has mainly physical and task-oriented, similar to
Lai et al. BMC Palliative Care (2018) 17:116 Page 8 of 11

the nursing care provided in other settings [66–68]. The believe that health care services are part of the general ser-
participants in this study thought that the quality of death vice industry [76]. They believe that health care providers
was unsatisfactory. However, since there have been few stud- must fix the patient’s problem as they requested, since
ies in China on the quality of death of patients, great effort they are paying for it. These factors also contribute to de-
is needed in the future to develop a localized scale to evalu- layed discussions of final treatment plans and to the con-
ate the quality of death and examine the level of satisfaction stant seeking of medical support in acute care hospitals.
of the patients and their families. This places a great burden on hospitals and wastes valu-
Having conversations about a patient’s poor prognosis able health care resources.
and final treatment plan is a difficult task for physicians, Much work needs to be done at the system level in
and such conversations are usually initiated at a very late Shanghai. A care pathway or special insurance policy should
stage in the study. This is similar to the practice of British be considered, as this would allow patients to remain in one
physicians [69]. Having been trained in an atmosphere of location without drifting among institutions. An end-of-life
active treatment for years, some doctors still think that pa- care network linking health care institutions at all levels
tients should be actively treated until the end [69]. Others should be considered as well. In recent years, new mea-
want to avoid deeper concerns [69], which they may not sures have been implemented to optimize health care
feel confident about discussing with patients and their fam- services in China. For instance, medical treatment part-
ilies. Despite the similarities to other areas in the world, nerships and community-based end-of-life care have been
dying in a family-oriented society is more complicated. developed [77, 78]. These measures facilitate the manage-
Traditional Chinese cultural values, i.e., filial piety and the ment of chronic diseases and provide more beds for cancer
power of the family, exert a deep influence on decision patients at the end-of-life stage. However, end-of-life care
making at the end-of-life stage [70]. Chinese people feel should be considered in various settings. Additionally, the
“culturally obliged to provide every possible means to keep health care environment in China needs to be ameliorated.
a patient alive” [71]. Accordingly, over-treatment at this The tension between patients and the health care system
stage is common. It is also common for family members to over the years has had a significant impact on the work of
make medical decisions on behalf of the patient, even when health care providers, causing them great stress and even
the patient is conscious [72]. In the future, how to involve danger. It has made them particularly self-protective, which
patients in end-of-life care, and to allow them to voice their may ultimately compromise the quality of care provided to
wishes will be a great challenge in China. patients.
The nurses interviewed in this study meet a number of
patients at the end-of-life stage in their work. This suggests Limitations
that end-of-life care is an area of practice for nurses work- This study reveals the service gaps in local end-of-life care
ing in general wards [73], but they are seldom involved in and identifies future directions for research. The partici-
judging the end-of-life stage or the dying phase. Bloomer et pants were not invited from hospitals in each division,
al. [65] also found that nurses took a passive role in recog- which would have provided a comprehensive representa-
nizing dying. The nursing care that was described in this tion of views. Using WeChat was a more efficient way to
study is still physical and task-oriented, although a certain recruit participants, but, it may have compromised the
amount of comfort care is given both physical and psycho- representativeness of the study population. In addition,
logical. This is similar to the nursing care provided in other due to limited time and human resources, this study was
settings [67, 68]. High-quality end-of-life nursing care in conducted in one city. The experiences of health care pro-
non-palliative care settings is lacking. viders in other areas and countries may differ.
Several challenges must be addressed before general
end-of-life care can be developed in local settings. Fridh Conclusions
(2014) suggested that education about the end-of-life stage General end-of-life care is underdeveloped in China. As
and a supportive environment are essential for providing health care institutions in China, and around the world,
end-of-life care [74]. These are exactly what are needed in are faced with increasing numbers of patients at the
Shanghai. A major obstacle to providing end-of-life care is end-of-life stage with longer life expectancies, it is time
that health care providers lack a clear idea of what end- to bring this topic to the forefront of health care service
of-life care means, as well as the relevant competencies. reform. An end-of-life service network that could benefit
Relevant training is necessary to bring about change. With patients with life-threatening diseases, and that could be
regard to patients and their families, the lack of a proper set up in institutions at all three levels, should be devel-
attitude towards death is a considerable obstacle in initiat- oped. The obstacles impeding the development of
ing end-of-life care in China. Chinese people usually hold end-of-life care should be resolved before a comprehen-
a negative attitude towards death, even when the patient sive end-of-life care system is established. Training pro-
is dying [75]. Meanwhile, many Chinese people mistakenly grams for health care providers and death education
Lai et al. BMC Palliative Care (2018) 17:116 Page 9 of 11

programs for the public should also be developed. In the Received: 28 June 2018 Accepted: 1 October 2018
future, more studies should be conducted to provide
empirical evidence for designing localized end-of-life
care programs, since patients with different diagnoses References
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