Background
Methods
Aims
Design
Participants
Data collection
Interview questions | |
1. Please enlighten me on the trajectory of disease(s) in your specialty. From your point of view, how would you define the end-of-life stage of the disease? | |
2. What kinds of treatment/care have you provided to patients at this stage? | |
3. What challenges/difficulties have you experienced when caring for such patients? | |
4. From your point of view, how should these patients be cared for? |
Ethical considerations
Data analyses
Rigor
Results
Physician (N = 13) | Nurse (N = 13) | |
---|---|---|
Age (Mean [SD]) | 39.00 (9.28) | 37.15 (4.34) |
Gender (n [%]) | ||
Female | 5 (38.5) | 13 (100) |
Education (n [%]) | ||
Tertiary school | 5 (38.5) | 12 (92.3) |
Master’s degree | 5 (38.5) | 1 (7.7) |
Doctoral degree | 3 (23.0) | 0 (0) |
Religion (n [%]) | ||
Buddhist | 3 (23.0) | 1 (7.7) |
None | 10 (76.9) | 12 (92.3) |
Marital status (n [%]) | ||
Married | 12 (92.3) | 12 (92.3) |
Divorced | 1 (7.7) | 0 (0) |
Single | 0 (0) | 1 (7.7) |
Working since graduation (year) (Median [range]) | 10 (5–37) | 17 (4–25) |
Working in this specialty (year) (Median [range]) | 10 (0.2–19) | 11 (1–16) |
Level of health care institution (n [%]) | ||
Tertiary hospital | 7 (53.8) | 6 (46.2) |
Secondary hospital | 4 (30.8) | 5 (38.5) |
Community health care center | 2 (15.4) | 2 (15.4) |
Specialty (n [%]) | ||
AED | 4 (30.8) | 3 (23.1) |
ICU | 1 (7.7) | 1 (7.7) |
Cardiology department | 2 (15.4) | 2 (15.4) |
Pulmonary department | 0 (0) | 2 (15.4) |
Gastroenterology department | 1 (7.7) | 0 (0) |
Hepatology department | 1 (7.7) | 1 (7.7) |
Nephrology department | 2 (15.4) | 2 (15.4) |
General practice | 2 (15.4) | 2 (15.4) |
Diagnoses of patients cared for by the participants (n [%]) | Total (n = 26) | |
Cancer | 22 (84.6) | |
Cardiovascular disease | 22 (84.6) | |
Diabetes | 11 (42.3) | |
Chronic obstructive pulmonary disease | 12 (46.2) | |
Renal failure | 16 (61.5) | |
Cirrhosis | 11 (42.3) | |
Dementia | 5 (19.2) | |
Parkinson’s disease | 7 (16.9) | |
Multiple sclerosis | 2 (7.7) |
Definition of the end-of-life stage
“A patient could be described as being at the end-of-life stage if he/she needs intravenous drugs to maintain (his/her physical status).” (Physician 15, cardiology)
Health care at the end-of-life stage
Hospitalization: Drifting in the health care system
“If a patient does not die soon, we will try to transfer him/her to a ward for further treatment.” (Physician 2, AED)
“After a patient stays in a ward for three weeks, we can arrange a self-financed re-admission. This means that the patient continues to stay in the ward, but pay all expenses by themselves for one week. After they can use their medical insurance again, we discharge and re-admit the patient again. All of the administrative procedures are done in the hospital information system. The patient stays in our ward throughout this period.” (Nurse 3, pulmonary)
“The patients had to keep moving. It was really painful for the patients and their families.” (Physician 1, hepatology)
“Eight to nine hundred patients died in our AED each year, the majority was patients with a chronic disease. We usually have more than 100 patients stay in the AED hall. Most are dying. They lie on trolleys. There are no curtains between the trolleys. They spend their last days in a place like a refugee camp.” (Physician 12, AED)
“For the patients, it was worthless.” (Physician 8, cardiology)
“For the tertiary hospitals, it was a waste of health care resources.” (Physician 1, hepatology)
Physiologically focused and excessive treatment
“We usually provide symptom-focused treatment, which is the main treatment in the last few days.” (Physician 12, AED)
“I can only control the pain and prescribe oxygen therapy. Other treatments (i.e., life-sustaining drugs, antibiotics, resuscitation equipment, etc.) are unavailable here.” (Physician 10, community)
“It is difficult to address this (psychological) area because of China’s health care system, or the doctors’ energy.” (Physician 8, cardiology)
Roles of patients and families in making treatment decisions
“Others, such as intravenous medications or nutritional support, would usually not be discussed, unless the family proposed it.” (Physician 5, nephrology)
“Some families continued treatment under the pressure of social judgment. They did not want to be blamed.” (Physician 14, ICU)
“We had (such a case) before. It was a young patient with cancer, who was able to communicate and had some medical knowledge. Only with such a patient could we have such a discussion (about the treatment).” (Physician 3, AED)
“Definitely the doctors discuss it [treatment] with the families. We are not sure whether the families previously discuss it with the patients.” (Nurse 1, hepatology)
“Most gave up at last.” (Physician 15, cardiology)
“We encountered such a situation. The family decided to give up. Then, the patient’s condition worsened at night. We used drugs and carried out cardiopulmonary resuscitation (CPR) to keep the patient alive in order to wait for all family members to come.” (Physician 10, community)
Instinctively enhanced nursing care
“I can only try my best. If the environment in the room is not good, I try to keep the room clean and tidy, and more comfortable, and to keep extraneous people out of the room.” (Nurse 13, AED)
“I would hold the patient’s hand if the patient was conscious. I think it was a comfort for him/her.” (Nurse 8, pulmonary)
Challenges, difficulties, and the future
Great pressure from families
“The biggest challenge is the unwillingness of the family to accept the patient’s condition. Some people had quarreled with us. At that time, my work became very difficult.” (Physician 5, nephrology)
“Some families were involved in their own interests when discussing the treatment plan. For example, they wanted to inherit the patient’s apartment. These kinds of families were very difficult to communicate with.” (Physician 14, ICU)
“The biggest challenge was the poor cooperation of the family. Last time, there was an elderly patient. We suggested that the family spend more time with the patient. But the family said, ‘You should take care of him since he is in the hospital’. Then they left.” (Nurse 10, cardiology)
“There was a patient who died suddenly. The family thought the treatment was delayed because of us. They could not accept this and smashed things in the ward everywhere.” (Nurse 2, AED)
Practical difficulties in the delivery of care
“We don’t collaborate with nearby hospitals at lower levels. Therefore, it is difficult for us to transfer our patients out.” (Physician 2, AED)
“The family usually requests us to not tell the patient the truth. So it becomes very difficult to comfort the patient when his/her condition is deteriorating.” (Physician 1, hepatology)
“The biggest difficulty was that some of their suffering could not be solved with my ability and skills” (Nurse 13, AED)
Urgent tasks in the future
“I think it is the attitude towards death. The society holds an attitude of avoidance towards death. Many Chinese cancer patients did not know their diagnosis until they died. They did not have the chance to realize their wishes.” (Physician 14, ICU)
“There are too many conflicts between patients and health care providers. We become exceptionally self-protective and careful when caring for dying patients. It causes great stress. I hope the environment can improve.” (Nurse 16, nephrology)
End-of-life care model in the future
“I think patients in tertiary hospitals still need this service. We may have one or two health care providers in each ward to deliver the care after training.” (Physician 1, hepatology)