Appendix 1: Focus group and individual interview discussion format
Discussion format for health professionals
Discussions about the future in a palliative care setting are often difficult. I am referring not only to discussions about life expectancy but also the likely symptoms that a patient may face in the future and the likely mode of death.
How do you tend to approach questions about the future from palliative care patients?
How do you tend to approach questions about the future from carers of palliative care patients?
How do you think information about the future should be portrayed during a palliative care consultation?
Do you ever initiate discussion about the future during a palliative care consultation? In what circumstances do you think this is appropriate?
When discussing the future with a palliative care patient or the carer, is there any way of communicating hope?
If a palliative care patient (or carer) asked about life expectancy:
What words would you use?
What sort of time frames would you give (if any)?
Would you give any statistics?
Would you draw survival graphs or use any other aids?
What advice would you give to palliative care trainees regarding discussion of the future?
Discussion format for patients and carers
Prognosis refers to likely future developments and life expectancy.
What information do you think is important for your palliative care doctor to tell you (or the person you care for) about your (their) prognosis? (not necessarily during the first consultation)
What information do you think is important for a palliative care doctor to tell carers about the prognosis of the person they care for?
How do you think information about prognosis should be portrayed during a palliative care consultation?
Who should initiate discussion about prognosis during a palliative care consultation?
Should palliative care doctors offer to discuss prognosis with you (or, for carers, the person you care for or with you the carer) at certain times?
Appendix 2: Participant quotes
Discussing treatment decisions at the end of life
“Have you discussed with the person who’s most important in your life, the following issues? ... Your wishes ... if you’re unable to make decisions for yourself about potentially life-prolonging treatment. Have you sorted out ... your power of attorney, your advance directive, whatever it is. Have you sorted out those issues, have you talked to your family about what you want, because I think one of the things that people don’t realize is that we will be asking families, what would the patient want under these circumstances, and they go no idea, never talked about it. So I think something around those issues is helpful ... But ... you’ve got some real challenges in getting the wording right and sorting out how it’s introduced.” (doctor 10)
“Discussions about ... whether we’d treat or not treat ... we’re different from a lot of other teams who seem to make decisions and then tell the patients what their decision’s been ... People that we see ... like the fact that we will sit down and go through the pros and cons, and it’s not necessarily a medical decision, it’s often a decision that we all make together ... We’d often say ... each time a problem occurs, we will sit down with you and discuss what’s happening and what ... are your options and what are the consequences from the ... options ... and people seem to like the fact that they ... have some choices ... Most people that talk to me, that’s the biggest thing they find in palliative care, that they’ve been provided with information, that you’re available if they want more ... and they haven’t had that before. In fact they’re often more impressed with that than the complicated pain control stuff.” (nurse 2)
Discussing future symptoms
“What’s going to happen to me and it’s sometimes about very concrete things like am I going to lose bladder or bowel control. Am I going to be confused or incoherent, but often it’s also at a more global level. Am I going to have to have someone come and turn me in bed? ... If so how am I going to cope with that because I don’t have anyone around to help? I think there are comments frequently around change in role, particularly ... loss of control is a theme I hear coming through very frequently ... From leading a fully independent life to actually saying to people I need your help ... or that they’re particularly concerned about ... the ... fact that at some stage they may not have the control that they currently have. So people are very frightened by that. I think sometimes you need to put it on the table. It must be really hard having people help you, and just leave some silence, and people turn around and say ... the most unbelievably confronting thing that I can imagine, or whatever they say.” (doctor 10)
“I would often say that I believe their condition could continue to deteriorate ... that they would become weaker and be not able to move around as much, not able to get out of bed, lose their appetite, become less involved with people around them, perhaps wanting more privacy, perhaps wanting more time to themselves and that eventually if there is some sort of an infection that might interfere with that gradually their condition will gradually get worse and they will eventually not be able to continue to communicate with people.” (nurse 1)
“Hopefully by my experience I can allay fears and say ... you’re more likely to just get sleepier and sleepier ... and ... you ... may not get ... pain at all, and that you lose your appetite, and that’s all quite normal, just sort of normalizing what’s going to happen and reassuring them that that’s how it usually is.” (nurse 3)
“I think it is important to help the people who are taking care of these patients, to understand the different stages because sometimes it is very confusing, ... what happens to the patient ... maybe he becomes confused and a little bit lost, just give a general idea.” (carer from focus group 6)
“It would be good to know what to expect. No one tells you at all. So even the oncologists they don’t say anything about the future, the symptoms and so as soon as something new comes I freak out.” (carer from focus group 6)
Preferences for place of death
“They ... find it hard to ask about terminal care and where that will happen. I think that’s a thing that people would ... sometimes benefit from thinking about a little bit earlier, so that we can set up things at home more and we wouldn’t end up having to admit people to palliative care wards for terminal care when they’ve ... been going ... along okay at home and the family have always wanted to keep them at home ... If we’d had a little bit more insight, or a little bit more warning about how much they wanted to look after them at home, maybe we could have ... got ... in earlier and allowed them to stay at home. So also thinking about where people die. But then a lot of that comes into the denial part of things and not really wanting to bring that up, because that would sort of mean acknowledging how seriously things are going.” (doctor 13)
“Often a question comes up from the carers, can the person be looked after at home ... and my response to that is ... it’s not black and white but there are essentially three things that determine whether a person can be at home, the first thing is what’s actually wrong with them, the second thing is what sort of care they’ve got at home and the third thing is what sort of services can be provided ... There are certain medical things that families don’t seem to be able to cope with if the patient’s very big and immobile and the carers are small then there’s just the physical problem with lifting when the person’s dependent ... Then the other two things that seem to freak families out are seizures and bleeding and if I don’t think the person’s likely to have either of them I would say to the wife look, the main two things that freak people out are if the patient’s going to start bleeding or start having seizures, and I don’t think that’s very likely to happen in your husband and I think he’ll just get weaker and sicker and with help you’ll be able to manage but it could be that right at the end he might need to come into hospital.” (doctor 11)
Discussing the terminal phase/dying—general quotes
“That’s a discussion I actually look forward to having because I know deep down that most people do want to talk about that (dying) and I do feel very comfortable about talking about it, rather than creating a concern it more often than not creates relief, not only because the subject has been brought to the surface, but some of the things that they’ve been worried about have been dealt with.” (doctor 9)
“People don’t often ask what happens when I die, but when I ask do you want to know, a lot of people say actually yes. That’s a big one, yes, what actually happens, what physically happens ... they’re quite interested in some of the more minute details.” (nurse 2)
“It’s very good to know that there is a place like this (palliative care unit) where you can be received and ... you retain your dignity. You have love and care surrounding you, and brave compassion and if ... the cards fall against you you are somewhere where you can ... be let down ... softly softly with great dignity and loving care ... So they give you back your human identity rather than a bed number.” (patient from focus group 1)
“I just find that they are not pushing the fact of ... having to talk about dying, that has not ever been pushed at all.” (carer from focus group 6)
“That was ... most important ... that I wouldn’t have to be making decisions ... that I would not be left trying to work out what to do, that the responsibility would not fall onto me to decide what happens next, because obviously I’m not skilled to do that. I wanted to know just what sort of support I would be given, because I always intended that it would be done at home ... I didn’t know how I would go being able to handle the physical part of things, like the showering and that sort of thing ... but knowing that somebody will help or ... do it ... for you ... was good.” (carer individual interview 2)
Discussing the terminal phase/dying
Exploring fears about dying and dispelling myths
“The first thing is dispelling myths ... people assume that it’s going to be a terrible horrible death and that ... cancer equals a person racked in pain, and so I’ll say things like ... one-third of patients who die of cancer may not have had any pain in the course of their illness and it depends where the cancer is and what it’s doing, but even if they have pain, 90% we should be able to get on top of really easily with relatively simple medications. The other 10% it’s a challenge, but that’s what we’re there for and that’s what we’re trying to sort out.” (doctor 12)
“I think basically they want to know if their death’s going to be pain-free and they’re going to be comfortable and dignified. Most of the patients would have a story to tell about a situation they’ve seen in their family or at any other stage of their life where they’ve seen people being really undignified and ... I think most people want reassurance that that’s not going to happen to them ... I think that’s the overwhelming fear, of pain and confusion and loss of dignity. They’re not that concerned about becoming a bit anorexic or losing their appetite, it’s really the pain and the loss of dignity that I tend to focus on.” (nurse 1)
Describing the final days and unconscious period
“The one that I talk about a lot ... is about unconsciousness at the time they’re dying ... I go through what I think happens ... The language that I use, it’s a deep sleep, I’ll say it’s very similar to sleep ... you’ll eventually reach a time where you’ll sleep more and more and you’ll wake less and less until eventually you’re sleeping all the time until you die ... But ... again you’ve got to do it carefully because if you do it badly they’ll think ‘oh, if I go to sleep tonight, I might not wake up’, so I’ve got to spend a lot of time and check with them that they’ve understood and that they see it as going into a state which is like a sleep. It’s not the same as the sleep they have at night. So I do like to spend a fair bit of time talking about that ... what we do to care for them ... why we need to continue treatment for pain relief, even while they’re asleep and unconscious.” (doctor 9)
Dilemma of discussing potential complications around the time of death
“With lung cancer, a lot of people are terrified that they’re going to suffocate to death and to reassure on that point is ... really important and ... even giving the worst scenario that if ... you really ... couldn’t get your breath then we can actually give you medications that will help you sleep so that you’re not aware of what’s happening. ... but that’s the worst scenario and I’ve hardly ever had to do that and chances are that that won’t happen ... basically even in the worst situation we can still manage it and we’re not going to let you ... be gasping for air.” (doctor 12)
“You have to be careful once you start talking about prognosis exactly what things you talk about and how much you highlight those possibilities ... You find sometimes that you can give a little bit too much information about what could happen and unfortunately we sometimes see people very very anxious once possibilities have been discussed with them, such as massive haemorrhage and things like that.” (doctor 13)
“I don’t think it would be a good idea to tell the patient whether you might have this terrible problem ... but on the other hand ... the carer ... may well benefit from that ... ‘look watch out for this ... these sorts of things ... if you observe this happening call us’, you might not tell the patient because then they are a bit inclined to go looking for it.” (carer from focus group 6)
Food and fluids for the dying person
“I always spend a lot of time talking about food and fluids because family are concerned that they might die of starvation or die of thirst, so I spend a lot of time trying to allay those anxieties, and for the patient concerned when they’re hearing that it at least is a relief that they don’t have to eat. Sometimes they eat only because family bring food in, or in hospitals we have this ridiculous idea that we bring food trays around three times a day, in other words continuing what is normal, what is perceived to be normal in our society but which is particularly abnormal for people who’ve got cancer or dying of cancer, so I talk about those things too.” (doctor 9)
“She (wife of patient) just breaks down and she’s finding it hard to go into the room now. She’ll go in to give him a couple of spoonfuls of food ... he’ll take ... a bit in his mouth, just a taste and it just breaks her heart.” (carer individual interview 3)
Discussing what needs to be done immediately after death/funerals
“What to do after someone dies. That is asked a lot of me. You know, how to arrange a funeral, what happens, where the body goes, who looks after the body, is it treated well, where’s the morgue, are they put into a bag, all those questions I get asked. How the body feels after a couple of days, is it stiff and cold.”(nurse 1)
“Somewhere along the line ... we need to talk to people about funerals.” (pastoral care)
“Information about particular things like funerals, and procedures of contacting ... for some people that point doesn’t come, because it’s just something they don’t talk about, it’s taboo and maybe culturally it’s taboo, or the family’s protecting the patient and doesn’t want anything said to them ... that’s why we go in fairly carefully and fairly gently to begin with, and don’t bring up those issues early on until we’ve done a general sort of assessment.” (social worker)
“They sat there and explained things, that because he was on the breathing machine, he could pass away and the machine would still be going, so they sort of told us what to look out for, and how we should call a doctor, for a certificate and then we could call the funeral parlour and all of this. They said we can ... call our family doctor so that they can come and write an initial certificate.” (carer individual interview 3)
“When the patient talks about their ... life after death ... their religious beliefs throughout life, or that they’ve been a strong believer of this, or a strong believer of that, to actually just feel comfortable in being in that discussion in the first place, being a part of that discussion rather than saying oh this is not my area. To actually be quite comfortable in letting them express things they want to say, and sometimes in relatives, if they have expressed various issues about that, I feel quite comfortable talking to them about other people’s experiences that I’ve heard, of them feeling the presence of the person around after they’ve gone, and actually just exploring some of those issues.” (doctor 4)
“I suppose it’s an existential thing what’s it like to die. It must be forefront in their mind but ... it’s not asked very much so I will talk about that, I will say look I don’t know what it’s like to die because I’ve never done it but I’ve looked after a lot of people ... Finally they might come up with the really difficult questions, what happens after I die ... they ask a lot of questions for which I can’t and should not answer, but just allow them to talk about it is important.” (doctor 9)
“But ah you know, as far as myself, ah I am at peace with myself and the world and I don’t have any great fears about up there. Now we do have pastoral care here. Which is quite good, I mean we have a variety of people who are approachable and you can discuss with them anything you like. Ah but they don’t push you. That’s a very good point, that they don’t impose their thoughts.” (patient from focus group 1)
“They talk about the healing process, and they don’t just talk about that in terms of making any progress physically but also spiritually ... which is great.” (carer from focus group 6)