Overall, this study identifies that respondents perceive there to be scope and need for improvement in symptom management for individuals at the end-of-life. The following themes and subthemes were identified (see Fig. 1) and are discussed in turn: pain (assessment, management and place of care); breathing difficulties (management and respiratory secretions); terminal agitation (assessment and sedation); nutrition (determining need and enteral feeding); and hydration (thirst, risk, artificial hydration and Liverpool Care Pathway).
Pain
Pain was the symptom most discussed by respondents. Interestingly, few responses came from people identifying as being in the last few years of life. Primarily responses were from healthcare professionals and current or bereaved carers. Respondents discussed pain assessment, management and the impact of place of care.
Assessment
The need for effective pain assessment was highlighted as an important issue by bereaved carers and healthcare professionals. Of note, carers questioned how they would know if their relative (the patient) was in pain, which was viewed as particularly problematic if the patient had a degree of cognitive impairment or were unable to express themselves verbally. Multiple responses related to dementia and concern about how pain can be assessed in patients with this diagnosis:
“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)
Respondents questioned whether methods for assessing pain in people unable to communicate verbally, or with cognitive impairment, were adequate and evidence-based. One healthcare professional, whose son had died from a brain tumour, called for more appropriate methods of assessing pain in people unable to verbally communicate, recognising that pain is a subjective experience:
“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
Healthcare professional competencies
Respondents questioned whether healthcare professionals would be competent and confident to effectively manage their relative’s pain. Respondents highlighted that pain management was a central aspect of palliative care and their primary concern for people at the end-of-life was that they were pain free. Carer respondents sought reassurance that healthcare professionals would manage their dying relatives’ pain appropriately and ensure they were comfortable:
“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)
However, others – primarily bereaved carers - shared their upsetting experiences of their relatives being in pain at the end of their lives. The use of evocative language in the quote below conveys the respondent’s deep feelings about their experience:
“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)
Several respondents reflected on the reticence of healthcare professionals to prescribe or administer adequate analgesia as a particular barrier to achieving pain control. While one respondent described nurses refusing to give morphine to their dying relative, another queried why healthcare professionals were seemingly wary of administering analgesia:
“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)
One bereaved carer described a General Practitioner refusing to prescribe analgesia for their dying mother:
“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)
Models of care
Respondents offered recommendations for how to improve pain management. A member of the public suggested measures to ensure appropriate, timely pain management for patients. One suggestion included the use of technology such as Skype to enable a healthcare professional to assess a patient without the need for a home visit or the patient attending a clinic:
“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)
Managing non-malignant pain
Many respondents questioned the most effective ways of managing pain for patients with non-malignant conditions, including motor-neurone disease, Parkinson’s and heart failure. For example, a carer asked:
“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
Respondents felt strongly that place of care affected the likelihood of adequate pain management. In terms of hospital care, there was concern that pain relief was not planned for, and patients would not be prescribed adequate levels of analgesia by non-palliative care professionals. A bereaved carer questioned whether non-palliative care professionals need more support to care for patients who are reaching the end of their lives:
“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)
Conversely, there was unease from other respondents that individuals being cared for at home would not receive effective pain management:
“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)
Much of the worry about pain management at home related to out-of-hours care provision and whether patients could quickly access analgesia when required; these concerns were reiterated by a palliative care nurse and a patient:
“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)
Place of care was an important issue for carers who lived with feelings of guilt if they were unable to fulfil their relative’s end-of-life wishes. One bereaved carer discussed her feeling of failure that she could not manage her late mother’s pain at home:
“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
Breathing difficulties as a symptom was mentioned less frequently than pain, but was a consistent concern for respondents, who were primarily bereaved/current carers and healthcare professionals. Respondents discussed management of breathing difficulties and respiratory secretions.
Management
Respondents questioned the best treatment for breathlessness and discussed the most appropriate time for treatment to commence. One respondent asked when pulmonary rehabilitation should be started for patients with Chronic Obstructive Pulmonary Disease (COPD):
“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)
Another respondent questioned how support for people with respiratory problems can be improved and whether intervention for breathlessness improves quality of life:
“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
Respondents asked a series of questions related to terminal respiratory secretions, primarily suggesting that this symptom is poorly managed and asking the reasons for this:
“Why is symptom control of respiratory secretions so poorly managed?” (R1235 – Patient, Current Carer, Professional, Member of the public)
Professionals recognised that this symptom is also upsetting for families:
“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
Respondents queried how agitation is best assessed and managed through the use of sedation. One respondent argued for a change in the diagnosis and subsequent treatment of “terminal agitation” through recognising it as “hyperactive delirium”:
“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
Several respondents recognised the need for appropriate identification and assessment of terminal agitation, questioning whether biochemical markers can be used to properly diagnose this condition:
“Are there biochemical markers that can help ascertain patients with terminal agitation?” (R1331 - Professional)
Sedation
The majority of responses in the agitation theme focused on management, specifically sedation. Carers discussed their negative experiences where sedatives were either not prescribed, or were not effective for their relative. Healthcare professional respondents questioned which sedative was most effective for agitated patients at the end-of-life, and how to ensure adequate doses of sedation are prescribed:
“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)
While respondents recognised the need to treat agitation, there was apprehension about the effect of sedation on the patient. Respondents were worried that carers were not given sufficient information about sedation, which could cause distress. There was also concern that sedation could make communication between the patient and relative difficult, cause nightmares, and hasten death, prompting one respondent to enquire about the effect on the person who has been sedated:
“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
Nutrition was discussed in terms of the longer palliative phase and respondents highlighted the importance of determining patients’ nutritional needs and the role of enteral nutrition.
Determining need
Several respondents indicated that further research was required to determine the nutritional needs of people towards the end of their lives. They suggested that identifying nutritional markers would enable healthcare professionals to identify when patients’ nutritional needs are changing. One healthcare professional felt a stronger evidence base would enable carers to feel reassured if the person at the end of their life reduced their dietary intake:
“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
There were many responses from healthcare professionals querying the role of enteral nutrition for people at the end-of-life. Respondents felt a stronger evidence base was needed regarding if and when enteral nutrition should be administered. Others discussed patients’ information needs and decision-making, including support given to patients to commence and withdraw nutritional support:
“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)
Responses from bereaved carers discussed distressing experiences of enteral nutrition, which highlighted poor communication and lack of respect for patient autonomy. One respondent discussed her father, who had a living will refusing artificial nutrition, being repeatedly asked about having enteral nutrition during the last 4 weeks of his life:
“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
Responses to hydration focused on the last few days of life and considered thirst, risk, the role of intravenous and subcutaneous fluids, and bereaved carers sharing their experiences of hydration and the Liverpool Care Pathway (LCP).
Thirst
Several respondents were concerned about patients being thirsty at the end of their lives. One bereaved carer asked whether it is “cruel” not to hydrate patients, while another questioned whether individuals experience a dry mouth or 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
Conversely, respondents recognised the risks associated with patients drinking if they have dysphagia. A healthcare professional, who also identified as a bereaved carer, highlighted inconsistent practice, which demonstrated the need for communication between patients, carers and healthcare professionals:
“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
Following on from these concerns about patients being unable to swallow and thus experiencing thirst, respondents asked about the role of intravenous and subcutaneous fluids. Healthcare professionals questioned whether administration of fluids makes patients more comfortable:
“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)
Respondents recognised the concerns of carers and called for further research to identify the support needs of carers when managing artificial hydration for a dying person:
“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)
Another respondent suggested that research is needed to holistically evaluate the role of intravenous fluids for dying patients:
“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
Hydration was an emotive subject for bereaved carers, who shared distressing stories of relatives’ deaths, revealing their guilt, anger and sorrow about the Liverpool Care Pathway (LCP). One individual recalled her mother’s death and her residual feelings of guilt that, following the Neuberger Report [19], her mother died feeling thirsty:
“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)
One respondent spoke in even stronger terms about the LCP and described their relative as being “put to death”:
“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)
While one respondent questioned how oral fluids could be stopped without an assessment from a speech and language therapist, other respondents asked why their relatives were not given artificial hydration when they could no longer swallow. A bereaved carer asked why the LCP denied artificial hydration, which resulted in them “begging” healthcare professionals for help, highlighting the importance of appropriate communication and engagement with carers at the end-of-life:
“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)