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Abstract
Background Evidence currently suggests that many people would prefer to die at home. However, optimal end-of-life homecare depends on the patient's ability to express their care preferences, prognostic awareness, complexity of care, concordance of patient/carer preferences and availability of appropriate services/support. This study explores Irish Head and Neck Cancer (HNC) patient and caregivers’ views on end-of-life care (EoLC), an area hitherto little studied.
Methods Qualitative data were collected using semistructured, one-to-one interviews with HNC patients with therapeutic experience and their nearest caregivers (n=10, 7 patients, 3 carers). Interview topic guide was developed from the PRISMA EoLC survey. Thematic content analysis was employed to interpret findings.
Results Thematic analysis identified five broad EoLC themes: prognostication, decision making, preferred focus of care/advanced care planning (ACP), preferred place of care/death, perceived barriers/supports to home death. Participants were very willing to discuss most aspects of EoLC, exhibiting no signs of distress. Patients were reluctant to discuss preferred focus-of-care and ACP. This seemed linked to an overly optimistic view of aggressive medical intervention. While carers favoured full patient involvement in decision making, patients were divided between wanting autonomy and those preferring a more passive approach. All expressed a preference for homecare, and most felt they would ideally prefer to die at home. However, decision making was considered a complex process intertwined with risks, responsibilities and commitments to others. Carer burden and symptom control were major concerns.
Conclusions Normalising discussions on EoLC may benefit those affected by HNC. However, in HNC, this needs to be done alongside discussions regarding potentially life-extending treatment, symptom management and support.
- Communication
- Prognosis
- Terminal Care
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Introduction
Provision of quality end-of-life care (EoLC) has been identified as a national priority by governments, healthcare organisations and the public.1–4 Optimal EoLC aims to preserve a dying patient's dignity by providing care in accordance with their wishes. Evidence suggests that most people would prefer to be cared for and die in their own home, surrounded by their loved ones.1–3 ,5 This, however, presupposes the availability of a suitable environment, family willing and able to nurse a terminally ill patient, and achieve adequate symptom control. Success in meeting the patient's EoLC preferences also depends on the complexity of care required, ability to express their care preferences, patient–family caregiver congruence on preferred place of care/death, and availability of appropriate support services.6
Caring for Head and Neck Cancer (HNC) patients is considered challenging even for healthcare professionals and palliative care staff due to fungating wounds, complex nutritional regimens, risk of airway obstruction, haemorrhage, and psychosocial problems associated with chronic pain, communication difficulties, disfigurement and addiction.7 ,8 Death from HNC usually occurs after a protracted struggle with loco-regional disease, described as ‘one of the most unpleasant and agonising ways a person may die’.8 Caring for HNC patients may, therefore, place immense strain on informal caregivers, making them vulnerable to health problems, psychological distress and higher mortality rates, reducing carer and patient quality of life.9 ,10
Timely access to appropriate EoLC depends upon the patient's and caregiver's level of prognostic awareness, understanding of the risks/benefits of aggressive medical intervention and awareness of palliative care concepts.11–15 This in turn, depends upon their ability and willingness to engage in dialogue with their medical team and relevant family members. While information-giving is an essential aspect of clinical care, research suggests that physicians may avoid initiating conversations on prognosis and end-of-life issues for fear of causing distress to patients/carers by raising issues they may not wish to discuss.16 ,17 When EoLC discussions are avoided or poorly managed, the quality of the patient's remaining life can be seriously impaired, causing additional distress to all concerned.16 While researchers have explored the general public's views on prognostication and EoLC, little is known about how much information people want in advanced disease.17 This study aims to explore the views of Irish HNC patients/carers on prognostication, EoLC preferences and willingness to discuss such issues, areas where there is a paucity of research.
Methods
Design
Data were collected using semistructured interviews during the qualitative phase of a mixed-methods research project undertaken for the MSc in Palliative Care at King's College London (KCL). The project comprised an initial quantitative study on Irish HNC patients/carers’ informational support needs (n=58) followed by a qualitative phase exploring patients’/carers’ views on issues from diagnostic experience to EoLC.18
Setting
The quantitative study was undertaken at the Regional Ear, Nose and Throat (ENT) Department. Interview timing and location (hospital/home/hotel) were chosen by mutual agreement. Patients and carers were interviewed separately to minimise potential inhibitions.
Ethics
Ethical approval was obtained from the local clinical research ethics committee and the biomedical, dentistry & medicine research ethics subcommittee (BMD), KCL (BDM/08/09-87). Third-party recruitment for Phase 1 ensured voluntariness. To minimise distress, all interviews were undertaken by an experienced HNC clinician (EMO) with training in counselling and EoLC communication; potentially emotive questions were flagged in advance; participants were free to opt-out of any question or terminate interview at any time. Participants self-completed Pessin's Brief Burden/Benefit Questionnaire at the end of the interview to assess interview-related distress.19
Participant recruitment
A purposive sample of 10 participants was selected from quantitative study respondents who volunteered for the qualitative phase (45/58, 78%); purposive criteria included a variety of age, gender, HNC site/stage/therapy (table 1). Potential participants were contacted by telephone, study implications explained and interviews arranged.
Participant demographic data, treatment history and current status
Data collection
Data were collected in one-to-one, semistructured interviews. The interview topic guide was developed from the PRISMA population-based telephone survey on preferences for EoLC in Europe, available at Annals of Oncology online.2 In-depth, face-to-face interviews facilitated deeper exploration of issues raised in PRISMA Q1-11. Participants read the interview topic guide (box 1) before signing the consent. Interviews, averaging 43 min (range 14–57 min), were digitally recorded and transcribed verbatim, checked for accuracy and anonymised (EMO). Transcripts ranged from 1533 to 10 531 words (50+ text pages). The interview protocol included an opening statement, key research topics with probes based on current literature and clinical experience. Interviewer's comments and field notes were recorded during or immediately after interviews and used as reflective notes. Dialogical validation (member checking) was performed during interviews to ensure accurate representation of participants’ comments, using paraphrasing and summarisation for clarification; interviewees were also offered full transcripts giving participants an opportunity to correct errors and challenge wrong interpretation.
Key topics explored during interviews
Cancer journey
Discovery and diagnosis
Treatment received and current care requirements
Information received to date
Diagnosis—quantity; timing; format; suitability
Prognosis—quantity; timing; format; suitability
Information preferences; optimisation; supports/barriers experienced
Future information needs and preferences
Re potential symptoms/problems
Re-prognosis in event of recurrence/limited time left
Risk/benefits of possible care options—active intervention versus palliation
Information delivery—by whom, how, when, how much, ‘good bits’ only?
Decision-making process
Who should be involved in the decision-making process?
If patient had lost mental capability?
End-of-life care (EoLC)
Preferred focus of care—extend life at all costs or maximise comfort
Preferred place of care
Preferred place of death
Factors that would assist in achieving your preferred EoLC options
Perceived barriers to achieving preferred EoLC options
Data analysis
Data collection and analysis occurred concurrently, with interview questions being refined as the study progressed. Transcripts were read and reread before commencing thematic analysis. A ‘contextualist’ method was used to describe what participants experienced, to reflect on how they made meaning of their experiences (their ‘reality’) and to probe beneath the surface of their ‘reality’.20 A loose framework of interview topics was designed with initial themes/subthemes identified in each interview, using an inductive or ‘bottom-up’ approach. In this approach, the themes identified are strongly linked to the data themselves rather than trying to fit themes into a pre-existing coding frame or the researcher's analytical preconceptions.20 Interview quotes were initially allocated to broad, loosely defined codes. Following coding, data were conceptualised into themes which were modified on reflection and re-examination of data/field notes. Data analysis was subjected to independent review by research supervisor (IJH) to ensure coding validity and analytic rigour. Finally, an interpretation of the themes was constructed and compared with published literature.
Results
Demographics
Study participants (n=10) comprised five men and five women, ages ranging 33–74 years. All patients had received more than one treatment modality (table 1) and were 4–20 years postinitial diagnosis. Tumour sites included tongue, gum, tonsil, antrum and salivary gland; presentation stage ranged from early (T1N0) to advanced disease (T4N2). All patients, bar one, were in remission at the time of interview, but most had experienced at least one recurrence; one patient was palliative following extensive recurrence.
Thematic analysis
Following thematic analysis, seven broad themes were identified; five involved EoLC, namely: prognostication, decision making, preferred focus-of-care, preferred place of care/death, perceived barriers/supports to home death. The other two themes were diagnostic experience and tumour/therapeutic morbidity. Data on caregivers’ and patients’ views on EoLC are presented here with supporting quotes and relevant subject number, prefixed by S for patients and C for carers.
Theme 1: prognostication
Prognostication was explored on two fronts, namely: (1) initial prognostic experience and, (2) future prognostic preferences. All interviewees were comfortable addressing this topic. While none recalled ‘being taken aside to discuss prognosis’, all received some prognostic information, albeit somewhat obtusely. All adopted a pragmatic approach, directing their initial focus towards practical, procedural issues and getting through the required treatment. ‘There's no point beating about the bush because I'll have to take it, whatever it is’ [S24]. Even the youngest participant was content to be told ‘this should work’, seeking no further information [S37]. ‘Your mind tends to fixate on one thing which is “Is it curable?”… I remember, the two words that Mr X spoke is “eminently treatable”, and I remember thinking to myself, “well, get on with it”’ [C16].
Participants were asked if they would want to be told if they/the patient had less than 6 months to live. Patient preferences regarding future prognostication showed considerable variation and seemed based on personal preferences and coping styles. Some wanted full disclosure of disease progression and prognosis as they felt they would cope better if fully informed. ‘Yes, I would want to know for sure because it's me and MY LIFE…how I deal with the next 6 months is down to me!’ [S15]. ‘If you're given straight answers you are able to set the goalposts and you know where you're aiming for’ [S48]; ‘there's no point in hiding from the facts, that doesn't help’ [S32]. However, others adopted a more passive approach, preferring to live in the moment, letting the future take care of itself: ‘I don't go out of my way to find out anything because I'm happy as I am’ [S18]. ‘I wouldn't want to know because I think it puts less pressure on you’ [S04]. ‘I wouldn't like to be told exactly. I live very much in the present…You don't really look ahead’ [S37].
However, all carers wanted full information, maintaining that avoidance simply increases stress. ‘Definitely ought to! I have a big thing about not being told…. If it's incurable, tell me! I honestly believe that at least 95% of people would want to be told’ [C16]. ‘I would prefer to know so I could prepare. My husband does not want to know. I found that very stressful because I'm here looking after him, and I need to know what he wants or how he feels, but he doesn't talk about it’ [C05].
Theme 2: decision making
Participants were happy to discuss who should be involved in decision making. Patients’ views were equivocal between those wishing to: ‘leave everything to the doctor… whatever he'd say I'd put my trust in him’ [S18, S24, S32, S37] and those who favoured self-determination: ‘Decision is MINE, ahmm, if the consultant had HAD what I'd had, and as much surgery and everything—then yes, but that never occurs, so…no I don't think the consultant should decide!’ [S48].
Family involvement in decision making was a contentious issue. Patients were acutely aware that they existed as part of a family network which would have to cope with the repercussions of their decisions. They therefore felt their ability to exercise autonomy in decision making was constrained by responsibility, vulnerability and circumstance: ‘you can't make that decision without consulting your partner. It's my decision but I think you have to pay consideration to people who are around you or behind you’ [S4]. Some patients were concerned that their wishes might be over-ridden, and family might ‘take over’: ‘I did have a lot of trouble like, with my family trying to make all the decisions for me’ [S37]. ‘I would not be happy personally, if a decision was reached between the consultant and my wife about the rest of my life. I wouldn't be happy if people were talking ABOUT me rather than TO me’ [S15].
Interestingly, while carers wanted to be fully informed on all aspects of disease progression and future morbidity, they were adamant that all treatment decisions should rest solely with the patient, not family or medics. They considered this not only a matter of choice but of personal responsibility: ‘No, I think personally the patient should personally take responsibility for that, because it is HIS life!’[C16]. ‘It is the patient's decision because, it's their life’ [C05]. ‘That's the individual's decision—he's the one who's going to die!’ [C25].
Participants uniformly agreed that the ‘team and family’ or ‘next-of-kin’ should take responsibility for decision making if patients could no longer communicate their wishes.
Theme 3: preferred focus of care
Discussion on decision making was extended to include preferred focus of care if the patient's condition deteriorated, and advance care planning (ACP). While patients found this topic challenging, all favoured maximum medical intervention over palliative/comfort care: ‘I would absolutely want everything, every single measure taken …I'd like to be given every fighting chance’ [S37]. ‘I'm only... what … 74… there's guys that live to 80 or 90 so…’ [S04]. ‘I'd rather go ahead (with every treatment)’ [S24].‘I'd be all for it... I'd continue as long as I could and die when I can't help it’ [S18]. All patients, regardless of age, education or disease stage, seemed to view aggressive therapeutic intervention in a positive light while equating acceptance of palliative care with ‘giving up’ or ‘losing the fight’.
Carers believed patients should decide the focus of care, but felt quality of life should take priority over quantity. ‘Yeah definitely 100%... quality is more important than an extra fortnight’ [C25]. They felt this topic was too sensitive to broach at home and wished medical staff would ascertain patient's wishes: ‘Yes, it should be discussed with him…. it's too sensitive between us because my emotions are involved as well.’ Although ‘he hasn't talked to me about that side of things’, she felt certain her husband ‘doesn't want any more treatment. He's had enough!’ [C05]. However, her husband [S4] expressed contradictory views, revealing a marked lack of patient-caregiver congruence in this key issue.
Patients found discussion of ACP, resuscitation orders and living wills very challenging, seemingly equating a ‘Do not resuscitate’ (DNR) request with ‘that euthanasia type of thing’…‘giving up’ or a way of ‘reducing burden on health service’. When pressed, patients conceded that ‘the “do not resuscitate” issue should be discussed… at some stage… but not too early as you might change your mind’. Patients felt these decisions could not be made without consulting family, and wondered whether family would respect or over-ride such decisions.
Conversely, carers viewed ACP ‘as a positive thing, giving consideration to how YOU want to be treated’ [C16]. They felt resuscitation and living wills should be discussed sensitively at various intervals during illness, not just when a crisis arises. ‘There should be living wills made with a clause that you update every 5 years… like donor cards. People should have to opt out’ [C16]. Carers felt ‘consultants should raise it with the patient …. as a wife and carer, you are very close to the patient so … if there is a bad mood or the wrong thing said, it can be…too sensitive’ [C05]. They expressed similar views in relation to their own health, believing people should die with dignity and autonomy. ‘If I was told I had an inoperable brain tumour, I'd say leave me alone—just let me have my quality of life, let me be with my children and get my affairs in order’ [C25]. Another carer expressed even stronger views on self-determination: ‘I like to have control on me. So I know, if I got to a stage, where…I was …of no use… my brain had started to go, and… I was incontinent…I would do something about it… I do NOT want anyone looking after me and I would probably kill myself… I mean I would do it happily’ [C16].
Theme 4: preferred place of care and place of death
Participants were very comfortable discussing preferred place of care and place of death. Carers presumed their family member wished to be cared for and die at home: ‘There's nowhere like home…your home environment is terribly important…hospitals are clinical and impersonal and all you're looking at is illness’ [C05]. They believed extended family/friends could have more patient contact and support the carer better within the home setting. Even carers with positive hospice experience favoured home death: ‘I wouldn't want him in hospice. In the house everybody could do a night vigil…we couldn't do that in the hospice though’ [C25].
Home was also the preferred place of care for all patients, representing familiarity, the presence of loved ones, and the possibility of enjoying ‘normal’ life: ‘I want to stay in my own home for as long as possible…in the home environment you still have personal things around you, you're still able to move around your personal space whereas in a hospice or acute ward it's more regimented’ [S48]; ‘home is the best place because it's your own bed and you know where everything is’ [S15]. Patients felt they would have less access to extended family and grandchildren in hospital/hospice care: ‘their parents wouldn't be happy taking them to a hospital and a hospice doesn't cater for small children’ [S48]. Furthermore, some believed that remaining at home would help them focus on living, viewing hospice as a place where one simply waited to die: ‘For me myself, it's not only the actual comfort I want, it's the mental issue of feeling that I'm here (hospice) because I'm going to die’ [S48]. However, the youngest patient expressed a clear preference for hospice care, considering home death quite distasteful: ‘hospice…I think they're the best… people wanting to die at home… is extremely spooky’ [S37].
Accident and Emergency was considered the worst place to die: ‘Oh God, no, I'd hate to be in A&E unless it was very fast for me’ [S4]; ‘I would hate him to end up on a trolley in an A&E ward. That to me is not right, people should have much greater dignity than that’ [C05]. However, one easy-going elderly gentleman declared: ‘I'd be happy anywhere, anywhere at all as long as I could get a treatment—that's all I'd want’ [S18].
Theme 5: perceived barriers to home death and supports required
Finally, factors that facilitate/hinder home death were explored. Participants were surprisingly realistic about the challenges facing those wanting to die at home. Patients expressed serious concern regarding carer burden, particularly when caregivers were elderly with little/no extended family: ‘I suspect 9 times out of 10, dying at home isn't an option because the impact on your immediate family is too great …. myself and my wife, that's the family... so, it's all going to fall on her shoulders and that is colossally unfair’ [S15]. ‘I'd rather be at home. However, the day would come when my wife will just not be able to look after me’ [S4, S18]. ‘I want to stay in my own home for as long as possible, IF my family could cope with it’ [S48]. ‘Well, it would depend how bad it was…I wouldn't want to put anyone under such pressure…it's important to think of others first, I wouldn't want to put a strain on them any more than you have to’ [S32].
When asked if they would compromise on symptom control to stay at home, all participants, bar one [S48], felt availability of expert care was ultimately the critical factor: ‘It's a difficult one…but you go where you're going to get the most professional care’ [S32, S18]. ‘I would want to go where all the medical expertise is at hand and can be called upon at a fraction's notice…because its split second decisions that save the day; the impact on family and amount of responsibility is colossal… impact on them personally is unfair, because… they want to do their best for you…but at the end of the day…it probably isn't enough, because there isn't the medical knowledge and expertise’ [S15].
While carers wanted to fulfil their family member's wishes, they queried their physical endurance, ability to face unpleasant aspects of illness, particularly incontinence, and to maintain patient comfort and dignity: ‘If he said “at home”, that's not a problem. However, I'm not stupid, he's twice the size of me, I can't lift him and I'm not great with poo, so…I'd have to have a discussion about what stage do we…. not admit defeat but say…we can't cope any more’ [C16]. Carers were very aware of their limited medical skills and worried about unintentionally harming their loved one or being unable to achieve adequate symptom control: ‘I think it would depend on how painful the situation would become and if I was able to cope’ [C05]. ‘I wouldn't have the authority to increase the pain relief’ [C25]. Inability to provide adequate care at home was associated with feelings of guilt or personal failure: ‘I would always say look, you're coming home … but I don't know just how bad he would get’ [C05]. ‘I don't want you put in some dump somewhere, because I will go ballistic’ [C16].
Finally, participants were asked what resources were available/needed to facilitate home death. Participants were generally confident regarding access to medical equipment/devices: ‘I know there are syringe drivers and things available for morphine and that sort of thing, people can access these at home’ [S48]. However, they expressed serious reservations about availability of community nursing care and pain management. ‘The one person who has to be on hand very quickly is the local community nurse, or district nurse. They have to be close at hand, but they're going to be running around and only deal with situations as they see them, rather than palliative... constant care’ [S15]. Those who previously cared for someone dying of cancer, considered it impossible for one person to provide total care 24/7, ‘singlehandedly replacing an entire medical team’. Participants advocated greater funding for specialised homecare nurses to support those wishing to die at home, and those caring for them. Carers also highlighted the importance of knowing how to navigate the healthcare system to access care and resources: ‘They got no support because she didn't have a medical card—its automatic over 75 but by the time it came through, it was too late... When it was too late, the public health nurse came and applied for sheets etc… but we were calling for them for weeks’ [C25].
Interestingly, some patients felt the patient's personality played a major role in determining eventual place of death believing: ‘a positive attitude, determination and willingness to help themselves’ helped patients remain at home, while fear was a determining factor for those opting to die in a hospital environment. ‘I think it depends on the individual as well, and how much they're willing to help themselves... when I had open wounds I dressed them all myself…Other people might be too scared; they might feel better in a hospital environment or acute ward, where they feel safer’ [S48].
Burden/benefit questionnaire
Pessin's Brief Burden/Benefit questionnaire (table 2) was administered directly after each interview to: (1) assess interview impact on participants, (2) provide ‘wind-down’ period and (3) check if emotional support was required. While certain topics were emotive, participants reportedly found the experience helpful. All left in good spirits, declining counselling.
Burden/benefit questionnaire responses
Discussion
This is the first study exploring Irish HNC patients/carers’ views on prognostication, their EoLC preferences and willingness to discuss such issues. While patients’ views on prognostication varied by individual preference and coping style, carers considered full, accurate information on morbidity, disease progression and time remaining, essential for optimal patient care. Participants also favoured greater discussion of EoLC issues, advocating that medical teams initiate such discussions with patients and carers. While participants generally regarded home as the ideal place of care and place of death, decision making was seen as a complex process where wishes became intertwined with risks, responsibilities and commitments to others. Carers felt quality of life should be prioritised in advanced disease; conversely, patients favoured continued medical intervention, equating palliative/comfort care to ‘giving up’ or even euthanasia.
While studies indicate a preference among the general public for full disclosure in the event of serious illness, evidence is equivocal on how much information people with advanced disease want.17 Some researchers suggest patients want all possible information, whether good or bad,21 while others found that patients are selective in what they wish to know.22 Clinicians are often unsure if/when they should provide unfavourable prognostic information and, therefore, avoid initiating such conversations, fearing the information will extinguish hope, causing additional distress.23 In this study, all participants agreed that medical staff should initiate discussions with HNC patients and carers on prognosis, disease progression and EoLC issues. Carers were adamant that they needed full disclosure throughout the cancer journey to help them prepare for the path ahead, concurring with international reports that caregivers function better when they know the challenges to come.12 ,24 While patients varied in the amount of prognostic and EoLC information they wished to receive, all were willing and able to say how much information they wanted, suggesting doctors should not be afraid to initiate such discussions. However, information must be tailored to individual needs and delivered sensitively.
Patient involvement in decision making and meeting patient choice are key palliative care issues. However, little research has been undertaken on whether the current emphasis on autonomy aligns with public preferences, and whether systems adequately support patient choice once expressed.25 Carers favoured patient-determination in all aspects of care, viewing decision making as a burden patients should bear. They felt the medical team should ascertain the patient's EoLC wishes, considering this topic too sensitive to discuss at home. Patients were divided between those wishing to adopt a passive approach and those wishing to exercise self-determination. However, all participants believed that most EoLC decisions would ultimately be determined by circumstances beyond their control. Patients felt that decisions on further therapy and place of care/death could not be taken by them in isolation, as they had major implications for family caregivers. This feeling was reflected in participants’ views on preferred place of terminal care. Participants expressed a preference for home care and most would ideally prefer to die at home, concurring with research by Gomes et al.3 However, no one was confident that good symptom control, comfort and dignity could be maintained within the home setting, or that caregivers would receive adequate support. Participants felt the concept of ‘choice’ was constrained by many factors including availability of resources, symptom burden, knowledge of/access to services. Carer burden and concerns regarding symptom control were sources of considerable patient/carer anxiety, mirroring key themes recorded in a European study on public concerns regarding cancer care.26 Self-determination in EoLC may therefore continue to be seen as a romantic ideal by patients and carers until support systems are established to ensure a skilled care environment at their preferred place of care/death, without unreasonable caregiver burden.
While carers favoured comfort care, patients favoured maximum medical intervention. This may reflect Irish Catholic, sociocultural traditions which regard failure to use all reasonable measures to preserve life as morally equivalent to suicide, as death should only occur when God permits.27 ,28 While suicide was decriminalised in Ireland 20 years ago, assisted suicide/euthanasia still incurs strict penalties under Irish law. The concept of cancer as an enemy to be fought or defeated may also partly explain patients’ preference for futile life-prolonging interventions over comfort care. This highlights the need for honest, open communication on the risks/benefits of aggressive interventions to prevent patients becoming victims of irrational optimism, which can negatively impact on quality of life, and impede timely access to appropriate EoLC.
Strengths and limitations
This study builds on research undertaken by the PRISMA group, to explore EoLC preferences of those affected by HNC. While most of the patients were in remission, and views may change as death approaches, most presented with advanced stage disease, all received multiple therapeutic modalities, and most had suffered one/more recurrence. Patients and carers, therefore, had experienced the immense therapeutic burden associated with HNC, and had a clear understanding of the implications of further disease/intervention. While the findings of qualitative research are not generalisable, this study aimed to provide insight into the EoLC preferences of HNC patients/carers, and their willingness to discuss such issues, laying the foundations for further research.
Conclusions
This study suggests that HNC patients/carers would welcome normalising discussion on end-of-life issues, with medical staff initiating these conversations along the disease trajectory. Open and honest communication on potentially contentious issues, such as prognostic preferences, decision making and preferred focus of care should reduce caregiver burden, limit undesirable interventions and optimise timely access to appropriate services. Further research is advocated to explore how these issues could be raised appropriately within the limitations of various clinical settings.
While patients and carers generally see home as the ideal place of care and place of death, they fear it may result in an undignified death with poorly controlled symptoms. Furthermore, carer burden is a serious source of concern to patients and carers. Further research in needed to determine the best ways to manage the symptoms of HNC, and to support caregivers when patients are at home.
References
Footnotes
Contributors Research was undertaken by EMO under the supervision of IJH.
Competing interests This research was undertaken while the main author (EMO) was undertaking an MSc in Palliative Care in King's College, London which was part-funded by an Irish Hospice Foundation educational grant. However, this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Ethics approval All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national), and with the Helsinki Declaration of 1975, as revised in 2000.29 BMD, KCL (BDMM/08/09-87) & CREC Cork University Hospitals.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Full details of the research project are available from the MSc Palliative Care thesis repository in KCL, UK or the main author. Other publications are intended in the coming months on other aspects of the research including therapeutic morbidity.