Background
Methods
PeolcPSP study design and data collection
Q. What questions do you have about care, support and treatment of people who are in the last few years of their lives that could help them to live as well as possible? This could also include question(s) about care and support for current carers or families. |
Q. What questions do you have about care, support and treatment of people for those rapidly approaching the end of their lives? This could also include question(s) about care and support for current or bereaved carers or families looking after someone at the end of life. |
Supplementary data analysis
Respondents
Respondent (Reporting ID) | Responses relating to symptoms |
---|---|
I am in the last few years of my life (Patient) | 8 |
I am a carer or family member or partner or friend of someone in the last few years of their life (Current carer) | 24 |
I am a bereaved carer or family member or friend (Bereaved Carer) | 60 |
I am a professional working with people in the last few years of life (Professional) | 89 |
I am a volunteer working with people in the last few years of life (Volunteer) | 4 |
I am a member of the public who has an interest in the subject (Member of Public) | 27 |
Other | 23 |
Total | n = 235 Individual responses: n = 190 |
Ethical considerations
Rigour
Results
Pain
Assessment
“How to tell when someone in the very end stages of dementia is in pain and or distress” (R855 - Other - My husband died last year)
“How can we assess pain in people who are semi-conscious or under high doses of drugs?…I realise pain can be subjective, but it would be worth looking to develop better pain tools for those who are unable to communicate (either due to level of consciousness, impact of drugs, or due to the condition such as MND or stroke.” (R1064 - Bereaved Carer; Professional)
Management
“How do I know that my relative will be pain free at the end of life, will he/she be properly cared for by professional people” (R1376 – Current Carer)
“Mummy said to me that why was she suffering so when she had been so good all her life and was this the medieval age as she was being tortured?” (R339 – Bereaved Carer)
“why is it that people who are delegated tasks e.g. pain control are often frightened to do their job - with drugs often late or ineffective?” (R272 – Member of Public)
“she was restless, unable to settle and clutching at her chest which made me think she was in a lot of pain. Eventually the staff agreed to call out the on-call GP, who came quickly but said he couldn't give her a pain killing injection as it might kill her, although she was clearly dying; in fact she did die within an hour or two of his visit.” (R812 – Bereaved Carer)
“pain control needs to be faster, more comprehensive, run by skype, run by experts who can actually prescribe, by people who are not frightened to prescribe and make people comfortable - why is this often not the case?” (R272 – Member of Public)
“What sort of help works best - control of pain and other symptoms, ensuring no restlessness or distress? What is best for those with dementia or heart trouble or other conditions?” (R409 – Current Carer, Bereaved Carer)
Place of care
“Pain and symptom control is so important, however it is not always delivered in a timely way in hospital. Why do junior doctors find it difficult to prescribe the analgesia in the doses prescribed by the hospice? Do they need more support?” (R1049 – Bereaved Carer, Member of Public)
“Support is just not there for people in the last weeks of life for whom medication at home is not adequate to control pain.” (R801 – Bereaved Carer)
“Why does it still take so long to get someone to come and give pain relief etc. out of hours? The patients should be able to get pain relief etc. very quickly.” (R998 - Other - I am a Marie Curie Nurse)
“how do I deal with things such as nausea, tooth problems and debilitating pain, which can strike at any time (but typically do strike at weekends/pubic holidays)?” (R1165 – Patient)
“I would have liked her to be able to die at home, that was what she wanted, but I wasn't sure if I could manage her pain and whether getting the Hospice at Home care team there when needed would be feasible. I know I let her down over this.” (R398 – Current Carer, Bereaved Carer)
Breathing difficulties
Management
“Not all COPD patients have access to pulmonary rehabilitation despite NICE guidelines, and there is potential to improve their understanding, exercise tolerance and overall progression if targeted at the right time. But when is this?” (R75 - Professional)
“We currently have no way of measuring if we are having any impact on a patient’s quality of life following input from a physiotherapist, or medical input to manage breathlessness. It would also be beneficial to know if we were able to see patients like this slightly earlier in the disease process, whether we could improve their quality of life for longer.” (R75 - Professional)
Respiratory secretions
“Why is symptom control of respiratory secretions so poorly managed?” (R1235 – Patient, Current Carer, Professional, Member of the public)
“Why do we not have effective treatment for the management of respiratory secretions? This problem causes distress for many families who care for and are therefore dealing with this distressing symptom.” (R822 - Professional)
Terminal agitation
“Terminal agitation is a term that has little meaning. Hyperactive delirium at the end of life is a more accurate description. The difference is important since the former is traditionally treated with midazolam while the latter sets in train an assessment and management of the cause and, if drugs are needed, non-sedative haloperidol becomes first choice. An evaluation of end of life hyperactive delirium is long overdue.” (R907 - Professional)
Assessment
“Are there biochemical markers that can help ascertain patients with terminal agitation?” (R1331 - Professional)
Sedation
“What is the most effective way to use sedation (e.g. during terminal restlessness) - in order to get the balance right between not giving too much but at the same time giving enough to ease distress.” (R578 - Other - I am a professional now working in another speciality but worked in palliative care between 1997 and 2003)
“When people are sedated, are they really unaware of pain/what is being done to them/voices of those they love/extraneous noise from adjacent patients and ward activity? Or are they trapped in a situation where they are aware but cannot tell us? How do we know? How do we know when a person is unconscious rather than sedated?” (R320 – Current Carer, Professional)
Nutrition
Determining need
“I have had so many experiences of relatives and professional carers distressed because their loved one/service user hasn't eaten properly. It would be great to be able to re-assure them from the strong position of empirical evidence that their relative is not distressed.” (R1320 - Professional)
Enteral nutrition
“How realistic is the information given to patients regarding PEG feeds… Are they made fully aware that feeding would naturally diminish as the patient deteriorates and that it is therefore not appropriate to be giving 2000 calories in the last weeks/days of life.” (R349 – Professional)
“We found it very hard, because the feeding tube was mentioned again and again, and it was difficult to constantly having to defend his and our decision. The question is: How can health care professionals be persuaded that it is ok not to want a feeding tube and that this is down to patient choice and often better for the patient.” (R687 – Bereaved Carer)
Hydration
Thirst
“We say that people who do not want to drink at the end of life do not experience thirst, just dry mouth. How do we know?” (R320 – Current Carer, Professional)
Risk
“How to balance providing fluids to those who are dying who cannot swallow safely or easily? The practice of maintaining hydration/nutrition seems variable and inconsistent across patients/hospitals. How can the withdrawal of these be done in a sensitive and consensual way for person, family and medical/caring staff?” (R329 – Bereaved Carer, Professional, Member of Public)
Artificial hydration
“In the last few days of life families often worry about their loved ones not being given fluids, as a result they are often prescribed subcutaneous fluids. Does this really make the patient more comfortable or not?” (R12 - Professional)
Another respondent suggested that research is needed to holistically evaluate the role of intravenous fluids for dying patients:“I think families of dying patients would benefit from research on ways to support them in coming to terms with the withdrawal of IV drips and hydration in the last days of life. I'm convinced this is the source of much dissatisfaction with end of life care.” (R275 – Bereaved Carer)
“What are the advantages and disadvantages (physical, social, psychological) of parenteral hydration towards end of life - balancing appropriate hydration with the body's natural ceasing of normal function (also bearing in mind the distress that can be caused when a body cannot cope with increased hydration; the potential for medical ‘kit’ acting as barrier between patient and loved ones towards end of life etc).” (R578 - Other - I am a professional now working in another speciality but worked in palliative care between 1997 and 2003.)
Liverpool Care Pathway
“My mother died of breast cancer in the hospice in [names town]. My questions would have been about the Liverpool pathway - it still haunts me whether we did the right thing, and now that it has been stopped, I live with a terrible feeling of guilt that my suspicions were right. It felt wrong to stop fluids but the doctor told me she would effectively drown if they were continued. My mother kept trying to speak to me but was too weak, and I couldn't make out what she was saying. I am so afraid that she was asking for water.” (R398 – Current Carer, Bereaved Carer)
“We as a family have not been able to grieve for our mother who was taken away from us, she was put to death on the LCP and nothing was explained, we were told this is what’s going to happen now!! There was no dignity watching my mother gasp for breath over 4 days, she was denied food and water, why was this.” (R502 – Current Carer, Other - I watched my mother suffer for 4 days on the LCP)
“My mother was refused a drip in her final days. As an effect of her brain tumour, she ceased to be able to swallow on 26th December… she was incredibly thirsty and dehydrated but was - despite me begging for help - refused IV fluids even though they would have made her more comfortable. It appears that the Liverpool Pathway specifically denies fluids as part of end of life ‘care’” (R422 – Bereaved Carer)