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Table 2 Overview of all categories of type of error with exemplifying citations that may be considered as specific for palliative care

From: Patients’ perception of types of errors in palliative care – results from a qualitative interview study

Breach of the patient’s wishes or patients advanced directives

“An error in PC would be a deviation … from the agreed rules of the game.” (DUS 5)

 

“Well, I myself have an advance directive and I expect that what is written there will be followed. …I wrote it with my full mental capacity, I gave it a lot of thought. (If the doctor does not follow the advance directive) that would be an injury to me personally. Because he in fact ignores what I have said, he actually ignores my opinion…that is like a law, like other directives, if you submit yourself to these directives and state that you will work under these criteria then you can’t do anything because it is set this way, you can’t bully and not rebel against it, nothing helps.” (DUS1)

Trust/empathy

“The patient should feel safe with those people and should have trust in them, […] then they let themselves be helped differently. And when that is not the case, that would be a big mistake.” (DUS2)

“The purpose of palliative care is that patients do not get conventional medical treatment, […] where everything is measured, checked, tested and examined but that a doctor takes his time and turns to the patient and approaches the patient, perhaps to talk about spiritually, psychologically supporting the patient in his position where he may not have long to live […] If there […] is no space to express feelings and actually establish good communication with the patient, that I think would be a mistake for me, if a doctor does not bring this ability along.” (MUC7)

Psychologically

“In the psychological area very bad mistakes can happen […] there are conversations about people, for example, as if they were not present, that some people might be treated rough, […] in this context people could be seriously injured, psychologically damaged and that is a very big mistake especially in this area of care to leave people alone, in their pain, in their fears.” (DUS1)

(A psychological error would be) “when one might not recognize what the patient really needs psychologically, communicative, when one can’t respond to his fears or inspire confidence or can really provide consolation to him in the last hours.” (MUC7)

Communication

“It is important for the patient to be spoken to … yes even if it’s just a homeless person. You have to talk with them also. One talks with a dog so why should you not do it with a person. You have to try that even if they are stubborn, the people …, one has to talk to people.“(MUC3)

Information

“I think, a mistake might be, if you are not honest with people. I would view this as a large mistake, because I believe, that it is very important for the patients, … and many won’t do it, not because they are mean, but because they think it will calm us … but I believe that is not the issue, when you are ready, then you also want to know the truth.” (DUS2)

Resuscitation

“They are getting the signature that there will not be any resuscitation efforts. I would view that as a mistake, if there would be resuscitation efforts in this case, because it was noted in the palliative care ward and when someone is doing that it is maybe twice as difficult because I am not in a regular hospital or … in a regular emergency room, but I am in a hospital where I expect that people work alongside this dying process and not work against it.” (DUS1)

Prognosis

“A mistake in palliative medicine would be to state, for example … so now it’s time to head out to hospice and then one notices after three months, oops I am still here.” (MUC1)

Nursing measures

“In the nursing area there could be mistakes, that some type of lotions were incorrectly used.” (DUS1)

Insufficient symptom management

“… basically I can only hope… that I can depart this world without having pain. And that is what I demand and I would think it a big, big mistake if that would not be the case.” (MUC1)

Preparation for death not possible

“It would be a mistake if in PC the patient would not get the opportunity to prepare himself for death, which is only offered sparingly by society… so that they will give assistance in this area, towards this topic, in a serious conversation to get used to this and not just by saying, now you have to turn to the right side or left side and then the pulmonary therapist will come and tickle your foot.” (MUC2)

Involvement of relatives

“A mistake would have been from my point of view, if they (palliative care ward) would not include the relatives.” (DUS2)

Sedation

(A mistake in the palliative medicine would be) “if one would just be sedated… when from there on nothing else would work anymore.” (MUC6)

Patient as guinea pig

“To use patients for experiments, that I find is a mistake. … if everyone is trying something, another little bit here and there, such guinea-pig-like, that would be a mistake … maybe they can help someone at a later point … but for the patient himself I would think this a mistake, if they try things on me to maybe help others, when one is still here.” (DUS2)