| Literature DB >> 34223510 |
Rui Fu1, Jia Lu Lilian Lin1, Jianjun Jiang2, Tingting Zhou2,3, Jay Pan2,3, Peter C Coyte1.
Abstract
Background: Over the past 5 years, China has invested substantially in palliative care programs to meet the rising demand for such services. In China's mainland, most palliative care programs are embedded within an established hospital unit, but a small subset of providers practice exclusively in a stand-alone inpatient palliative care department. Objective: To explore the lived experience of professionals at an independently operating palliative care hospital department in China's mainland. Design: We used purposive sampling to select palliative care physicians and nurses. Semistructured in-depth interviews were conducted in person. Thematic analysis was used to elicit key themes that pertained to participants' lived experience. Setting/Subjects: Ten palliative care physicians and seven nurses at the palliative medicine department in the West China Fourth Hospital of Sichuan University in Chengdu, Sichuan Province, participated in the interviews.Entities:
Keywords: health personnel; inpatients; palliative care; palliative medicine; qualitative research
Year: 2021 PMID: 34223510 PMCID: PMC8241397 DOI: 10.1089/pmr.2021.0014
Source DB: PubMed Journal: Palliat Med Rep ISSN: 2689-2820
Interactions with Patients and Families
| Subthemes | Quotation(s) |
|---|---|
| 1.1. Frequent encounters with dying patients | Because I'm quite emotional, it's been very difficult, especially at the beginning, to work with these patients who are so severely ill and visibly suffering. My initial experience was extremely uncomfortable, almost too painful for me to bear. I felt really bad to be in close contact with these terminally ill patients every day. It took me about two weeks to adapt [to this work environment], and I had to slowly adjust myself over time. (N6) |
| 1.2. Having to withhold diagnoses from patients | We definitely will not tell the truth to the patient, but we must tell the truth to the patient's family members…In China, we still don't tell anything to the patient. We communicate mostly with their family members. If somehow the patient found out about their condition and couldn't handle it, their family members would make so much trouble for us. (D3) |
| 1.3. Witnessing the emotional and financial struggles of patients' family members | The most stress for me comes from the emotional reactions of patients and family members. Sometimes they are in denial that their loved one is dying, and many of those situations are difficult even for us to take in, let alone family members. (N7) |
| 1.4. Accommodating families' financially driven care decisions | One of our pressures comes from family members' lack of understanding. This lack of understanding is mostly due to their financial situation, since the choices available to them are bound by financial constraints. Many of the palliative care services are not covered in the public insurance scheme, so families have to pay out-of-pocket for most of the services we provide. That obviously puts a lot of pressure on families, and their goal is to restore their family member's health while spending the least amount of money. Because of this, they are often skeptical and antagonistic towards doctors, which puts a lot of pressure on us. It would be ideal for me as a doctor to only focus on the medical piece and not the financial piece. But for us, we have to take into account multiple factors, including the patient's condition, the cost of treatment, and the family's financial ability. (D2) |
| 1.5. Dealing with uncooperative family members | Many family members do not understand our job…Well, they've already spent a long time seeking treatment from many different facilities before coming here. Once they arrive [at our department], the family members themselves are like half-doctors, acting like they know everything. They don't respect our nursing staff and often question what we do. This is the kind of environment where we do our job…Most of the time we have to concede to family members so that conflicts can be resolved. (N3) |
| 1.6. Developing mutually trusting relationships | The patient was initially in pain, and he held a distrustful attitude towards us. As soon as he came in, he revealed a sense of distrust in his every word. But after we offered him a thorough explanation, and once his condition improved the next day, his attitude took a complete turn. Our mood improved as well…because we felt that our efforts were appreciated so that made us feel better. (D2) |
Factors Influencing Work Life
| Subthemes | Quotation(s) |
|---|---|
| 2.1. Positive work environment | Our department has a good environment, and everyone helps each other. The leaders are also very kind and caring, so newcomers to our department should find it an enjoyable place to work. (D4) |
| 2.2. Unmet needs for skill training | For the patients who come to our Department, some family members have told us that they weren't only hoping to receive palliative care services, but that they were also looking for some kind of spiritual support or mental health counselling. I feel that our Department is still lacking in this area, because we don't have any psychiatrists on staff who's specially trained to be able to actively intervene. (D1) |
| 2.3. Lack of special policies supporting palliative care | The medical insurance performance requirements, such as the obligation to provide a certain level of public insurance-covered health interventions, are perhaps the biggest source of annoyance for us. We not only have to face patients, but also have to adhere to the hospital's medical insurance requirements. We must implement these requirements and report on our performance on a regular basis. For example, we must explain why the antibiotic prescription rate in our department is so high, and why our department's mortality rate is so high compared to other departments. (D8) |
| 2.4. Limited public understanding of palliative care | Many people see our department as a place where patients await their death. They question the need for this place, they think that nothing happens here while patients wait to die. If the patient's condition is fatal and nothing more can be done to save their life, why spend all that money here? A lot of people can't understand because they think these patients are going to die regardless. (D3) |
Perceived Nature of Work
| Subthemes | Quotation(s) |
|---|---|
| 3.1. Nature of work as complex and demanding | Many nurses in our department wanted to transfer to a different department, they didn't want to stay here. Maybe everyone felt under pressure, in all aspects…because our specialty is indeed very complex! Patients will call you over each time they have some pain here or itch there, so you are always running around. I just feel that, after working here for over ten years, it's such a messy and stressful environment. (N1) |
| 3.2. Limited understanding of the profession from outsiders | People are very curious when I tell them about my job. Everybody knows about specialties like internal medicine, surgery, and so on, so when I mention palliative medicine, their first reaction is “what is that?” Then I say palliative care, but they still have no clue. When I finally mention hospice care, they usually respond with “oh so you are dealing with the dead” (N6). |
| 3.3. Deriving accomplishment from work | We once had a patient who had such severe pain at home that he wanted to jump off from the apartment building. Then he had come to us and we helped relieve his pain. After that, he could eat and sleep again, and he said his quality of life had improved to a level similar to a normal person, which was an enormous improvement. So being able to offer great satisfaction for patients made my job worthwhile. (D4) |
| 3.4. Encroachment of work stress into personal life | We face all kinds of pressures—psychological stress, financial burden, pressures coming from everywhere. I think the most important part is the psychological stress. (N6) |
| 3.5. Personal growth by viewing death as less taboo | The way we feel about patients in our department is different from how other departments see their patients. Sometimes we feel that death would be a true relief for the family members, because I don't think there's a need to force anything with these patients. (D8) |
Characteristics of Participating Palliative Care Professionals
| Characteristics | Counts (total | % |
|---|---|---|
| Gender | ||
| Female | 15 | 88.2 |
| Male | 2 | 11.8 |
| Age (years) | ||
| Mean (SD), years | 33.4 (6.4) | |
| Median (IQR), years | 34 (7) | |
| Range, years | 24–52 | |
| Marital status | ||
| Single | 4 | 23.5 |
| Married | 13 | 76.5 |
| Children | ||
| Has child(ren) | 12 | 70.6 |
| Without children | 5 | 29.4 |
| Native of Chengdu, Sichuan | ||
| Yes | 7 | 41.2 |
| No | 10 | 58.8 |
| Training | ||
| Physician | 10 | 58.8 |
| Nurse | 7 | 41.2 |
| Received formal training in palliative care | ||
| Yes | 3 | 17.6 |
| No | 14 | 82.4 |
| Years at the department | ||
| Mean (SD), years | 5.7 (5.2) | |
| Median (IQR), years | 5 (1) | |
| Range, years | 0.08–14 | |
| Professional experience before joining the department | ||
| Intensive care unit | 1 | 5.9 |
| Oncology | 2 | 11.8 |
| Endocrinology | 2 | 11.8 |
| Geriatrics | 3 | 17.6 |
| Obstetrics and gynecology | 1 | 5.9 |
| Internal medicine | 1 | 5.9 |
| Palliative care | 1 | 5.9 |
| General nurse | 1 | 5.9 |
| Administrative nurse | 1 | 5.9 |
| No prior professional experience | 4 | 23.5 |
IQR, interquartile range; SD, standard deviation.