Patients' experiences and perspectives of multiple ... - OPUS at UTS

Support Care Cancer (2016) 24:1373–1386 DOI 10.1007/s00520-015-2913-4

ORIGINAL ARTICLE

Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study Skye T. Dong 1,2,3 & Phyllis N. Butow 1,2,3 & Allison Tong 4,5 & Meera Agar 6,7,8 & Frances Boyle 9,10 & Benjamin C. Forster 6,9 & Martin Stockler 3,10,11 & Melanie R. Lovell 6,10

Received: 23 April 2015 / Accepted: 16 August 2015 / Published online: 4 September 2015 # Springer-Verlag Berlin Heidelberg 2015

Abstract Purpose Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients’ perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. Methods Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two

hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. Results Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, com-

Electronic supplementary material The online version of this article (doi:10.1007/s00520-015-2913-4) contains supplementary material, which is available to authorized users. * Skye T. Dong [email protected]

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Department of Palliative Care, Braeside Hospital and Greenwich Hospital, Hammond Care Palliative and Supportive Care Service, Sydney, NSW, Australia

1

School of Psychology, The University of Sydney, Sydney, Australia

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2

Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia

South West Sydney Clinical School, University of New South Wales, Sydney, Australia

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Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia

Discipline of Palliative and Supportive Services, Flinders University, Bedford Park, Australia

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Department of Oncology, The Mater Hospital North Sydney, Sydney, Australia

Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia

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The University of Sydney Medical School, Sydney, Australia

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Concord Cancer Centre Department of Oncology, Concord Repatriation General Hospital, Concord, Australia

3

4

5

Sydney School of Public Health, The University of Sydney, Sydney, Australia

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Support Care Cancer (2016) 24:1373–1386

passionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden. Conclusion Multiple symptoms have a profound impact on patients’ autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.

and perspectives of having MSs in advanced cancer, guided by Armstrong’s framework.

Keywords Symptom management . Symptom cluster . Palliative care . Advanced cancer . Cancer experience

Participant selection and setting

Introduction Patients with advanced cancer typically experience multiple concurrent symptoms (MSs) that can compromise patient outcomes such as quality of life and functional status in a multiplicative rather than additive manner [1–4]. Cancer patients perceive ‘symptom burden’ to mean loss of functioning and psychological suffering as a result of MSs [5, 6]. However, despite the known burden of symptom clusters, little is known about the experience and meaning of MSs for individuals with advanced cancer. Yet, these have profound implications for patients’ physical, psychological and social health [7–10]. To date, the vast majority of ‘symptom cluster’ research has been quantitative. Qualitative research, however, offers rich narrative data to provide in-depth understanding of patient perspectives not always expressed in the clinical setting. Four qualitative studies have explicitly examined the ‘multiple symptom’ or ‘symptom cluster’ experience of cancer patients focusing on patients with gynaecological [11], lung [12, 13] and head and neck [14] cancer. Only one study [13] included advanced cancer patients, finding that they ascribed individual meanings to different symptom clusters, which were associated with increased loss of function and fear of death. These studies were single centre, focused on specific cancers and did not explicitly investigate the meaning and significance of the multiple symptom experience for patients with various advanced cancer types or patients from both oncology and palliative care (PC) settings. There is little research on the experience of symptom interactions or how patients cope with MSs as a multidimensional subjective process [15]. Armstrong’s [16] model of symptom experience takes into consideration the multiplicative nature of symptom experience by emphasising interactions both between symptoms and within symptom dimensions (i.e. frequency, intensity, distress and meaning), which are central to patients’ perceptions of existential and symptom meaning. Therefore, this study aimed to describe patients’ experiences

Methods Study reporting is based on the consolidated criteria for reporting qualitative health research (COREQ), a checklist for explicit and comprehensive reporting of qualitative studies using interviews and/or focus groups [17].

Participants were eligible if they were diagnosed with metastatic cancer and experiencing two or more symptoms concurrently. Patients with cognitive impairment or those deemed medically unsuitable by their primary physician were excluded. Participants were purposively sampled to capture a diverse range of demographic and clinical characteristics and approached face-to-face by recruiting clinicians. Ethical approvals were obtained to recruit inpatients and outpatients through four sites, which included two PC centres (Braeside Hospital and Greenwich Hospital) and two hospital-based oncology departments (Concord Repatriation Hospital and The Mater Hospital) in Sydney, Australia. Data collection We developed an interview guide based on a literature review of the multiple symptom experience, the Armstrong framework and consultation with an expert panel of PC health professionals (HPs) (see Supplementary File 1). SD conducted a semi-structured interview with each participant between December 2013 and October 2014. Recruitment ceased when theoretical saturation, defined as the point in which little or no new concepts were arising from three consecutive interviews, was reached. All interviews were audio-recorded and transcribed verbatim. Data analysis The transcripts were entered into HyperRESEARCH (ResearchWare Inc., USA, version 2.8.3) software package for qualitative data management. Drawing on thematic analysis [18–21], SD, AT and PB inductively identified, recorded and made comparisons of concepts in the transcripts. SD refined the coding structure until it captured all the concepts about the participants’ experiences of living with MSs. We qualitatively compared participants’ perspectives between oncology, palliative care and home settings. To enhance the analytical framework, the coding framework was discussed


amongst the research team. This form of investigator triangulation ensures that the analysis reflects the full range and depth of the data collected.

Results Of the 66 patients invited to participate, 58 (83 %) completed an interview. Eight were too unwell to participate. Participant characteristics are provided in Table 1. The mean duration of interviews was 25 min. The average number of concurrent symptoms experienced was six. Fifty-six interviews were conducted face-to-face either in the hospital or participant’s home. Two interviews were conducted at home, 54 at the hospital

Table 1 Participant characteristics

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and two by telephone. In nine interviews, family/carers were present. We identified six major themes: imminence of death and deterioration, overwhelming loss of control, impinging on autonomy and identity, necessitating psychological adaptation, burden of self-management responsibility and valuing security and empowerment. The themes and respective subthemes are described in the following section with further illustrative quotations provided in Table 2. A thematic schema illustrating the conceptual links amongst themes is shown in Fig. 1. Progressive adaptation across the advanced cancer trajectory, derived from comparisons of patients in different settings, is shown in Fig. 2.

Demographics Patients (N=58) Sex Age Country of birth Has a primary caregiver Marital Status

Education Primary cancer type

Recruitment setting Patient type Palliative care involvement

Time since initial diagnosis (years) Receiving treatment

Number of symptoms experienced at time of interview Average duration of interview

N (%)

Male Female

15 (26) 43 (74)

Mean (SD) Australia Other Yes No

67 (12.7) 40 (69) 14 (24) 39 (67) 16 (28)

Married Never married

36 (62) 8 (14)

Widowed/separated High school or lower University or further study

11 (19) 23 (40) 27 (47)

Breast Lung

18 (31) 10 (17)

Gastrointestinal Gynaecological Other

12 (21) 6 (10) 7 (12)

Unknown Oncology Palliative care Inpatient Outpatient None (oncology only) Transitioning (partial) Complete involvement Mean (SD) Chemotherapy Radiotherapy Both None Mean (SD) Minutes (SD)

5 (9) 20 (34) 38 (66) 23 (40) 35 (60) 11 (19) 23 (40) 21 (36) 4.4 (6.0) 16 (28) 5 (9) 4 (7) 29 (50) 5.9 (2.4) 24.66 (10.58)

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Support Care Cancer (2016) 24:1373–1386 Selected illustrative quotations for the six themes

Themes

Quotations Imminence of death and deterioration

Constant reminder of impending death

Anticipatory fear of suffering

Volatility and uncertainty of symptoms

Trapped in a debilitating cycle of exhaustion

Demoralised by helplessness

Isolation/ withdrawal from others

BAt the moment, the symptoms I have are quite wasting. Just seeing the wasting happening in my body, that’s the only thing I see. And the breathlessness. I come to cold sweat in the night time fearing death. And I just said God, ‘It’s just enough—I’ve had enough of this, waking up and fearing—fear of death’. You can get really wound up in being very in your body and very aware of every little ache and niggle, analysing which part of you is dying^. [Male, 77, PC outpatient] “There’s definitely more anxiety when you have a little patch of pain, or moments of nausea, and moments of fatigue. That all just causes more anxiety about how you’re going to be, whether you’re going to get through it. I’m a little bit more aware of mortality at the moment. And so it kind of scares me. Anxiety—it just comes—when you’re feeling good you don’t feel so anxious but when you’re feeling like crap it just piles on in there. The physical is definitely, absolutely connected with the psychological”. [Female, 49, private oncology outpatient] BI’m worried about my symptoms increasing. I just want to be told what’s going to happen. I’m a black and white person, I like ‘this, this and this’ and that way I can be prepared for it. But right now it’s a bit Rafferty’s Rules^. [Female, 69, public hospital outpatient] “I sort of panic about not being able to breathe and sleep, I was getting the panic attacks with the mask on at night time. Breathlessness is such a scary symptom…it’s scary and it’s embarrassing, because it’s unpredictable. I’m anxious that I’m not going to be the same person”. [Female, 61, PC inpatient] Overwhelming loss of control “A roller coaster is exactly what I called it this morning because that’s what it’s like. You think you’re okay and before you know it it’s got you again and it’s taken you all the way, all the way down to the bottom”. [Female, 52, PC inpatient] “It’s [referring to symptoms] not a linear, spiral downwards at all, it’s quite volatile. If I don’t have good days, it’ll be a block of stuff, so I’ll notice the big dips, and that’s kind of why I’m so reluctant to have intravenous chemotherapy, because it’s such an obvious thing”. [Female, 52, public hospital outpatient] “It is collective in that you have chemo, you’re not feeling great and then it all just comes on—you can go into a great spinning down cycle of exhaustion. That’s the one thing that you wish you could regain, the strength from this fatigue”. [Female, 49, private oncology outpatient] BIt feels like a black cloud, like there’s no energy to do anything. Very, very tired. You think ‘I’d like to do so-and-so if I got up, but you never do it. Lethargic is the word’. I get bored and tired and I go to sleep. The concentration isn’t there. If you could get some stimulus in your brain, something to make it, what’s left of it, work a bit more enthusiastically, and my appetite’s rotten. But if only there was something to lift this lethargy, you just sit there and it’s there all the time, like a big black gorilla. Because it won’t go away^. [Female, 83, PC inpatient] “I’m too close to the disease and symptoms to have a detached enough view, so it would be better if I just shut up and lay here like a big log”. [Male, 83, PC inpatient] “If I don’t have cancer, I don’t have depression. It’s very holistic. My quality of life—if I got better and I could operate to even 60 or 70 % of what I did, it’d be worth living because I could do something. I’d be worthwhile, but if I’m useless, then what quality of life? I’m not contributing”. [Male, 66, PC outpatient] “I limit the visitors a little bit sometimes because if you’re not well, you can’t—I can’t cope with them really. I’m better off just in my own little world. I can deal with things in my own little world”. [Female, 61, PC outpatient]


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Table 2 (continued) Themes

Quotations “You know, I keep it to myself. I try not to worry other people. I bottle it in. Just bottle it in, you know, to the best of my ability. I get very down and I just feel like going off and crying, which I do sometimes”. [Female, 67, PC outpatient] Impinging on autonomy and identity

Losing independence

“The main thing is you can’t walk too far. They can give you [pause] morphine to help breathe, but [pause] basically that’s a stumbling block. Breathing, right. It limits my autonomy. Everywhere. And independence, because it restricts you from travelling, like [pause] walking down the corridor here. So you’re sort of—Very, very, very restricted. I used to be very, very active. It is a bit of a bind to me”. [Male, 77, PC inpatient] “The instability is an issue, it limits my independence a lot of the time. My partner’s watching me all the time. All the time, a pair of eyes, in the lounge room. Where are you going? What are you doing? What are you doing out there? That’s sometimes frustrating”. [Female, 61, PC outpatient]

Self-advocacy for quality of life

“Let me put it this way to you, with my final wish of [pause] don’t let me suffer but don’t prolong me life. My final wish is recorded paper-wise. As the time goes… as I go along the journey, don’t let me suffer, in other words ah, don’t prolong my life”. [Male, 81, PC inpatient] “How much is my quality of life worth? That’s a real trade-off. And maybe if I’ve got things I wanna do, I better do them because you’re not gonna live quite so long that you used up the rabbits in your hat. There’s only a few rabbits there and so I chose to use my rabbits, so that I sleep better and I’m symptom free so I can go back to a happy, normal life. But it won’t be long. I’m aware that [pause] I’m chewing away at my future”. [Female, 62, private oncology outpatient] “I try not to worry other people. See, I’m old school and I believe that people getting help, at least let them keep one thing—keep their dignity. Because that’s just, for my age, people in my generation, it’s not done. It’s the asking that’s difficult. That’s the problem. My whole life, I’ve done it myself. I didn’t ask for help. So making this shift is quite difficult, It’s a big thing. And a lot of people, they don’t understand it”. [Female, 67, PC outpatient]

Reluctance to burden others

Refusing to succumb to a diminished self

Accepting the impossibility of recovery

Seeking distractions

BI have to go on walks, because otherwise I feel like I’m dying. I’m constantly trying to do things that prove to me you know that I’m actually, that it’s [the symptoms] not actually taking me over… And when I sat down with my friend and said these are my symptoms this is what I’ve got, she said to me ‘my god, you’re laughing and smiling, you look fantastic!’. So to be told those things, for me that’s really important. I think that is what really drives me, people saying ‘my god you look fantastic.’^ [Female, 52, public oncology outpatient] Necessitating psychological adaptation BAcceptance of where you are, if you don’t accept where you are today, then you won’t deal with it. I’ve dealt with the clinical psychologist in my initial bladder cancer which is—she was wonderful. She’s helped to just accept what I have right now. And accepting the fact I’m living day by day. You can’t do anything more than that, I reckon. In a sense, and probably this is not [pause] a good way of putting it, but I look forward to death. ‘Cause I don’t fear it.’^ [Male, 77, PC inpatient] BYeah You feel like, ‘Why me? It’s not fair’. I feel it’s not fair I’m sick, I’m young and I feel cheated, you know. But I’m getting better at accepting. I sort of think you know, don’t be selfish, be grateful. Once you accept that, you tell yourself that whatever you do that makes you feel better, you take it. And that’s how I look at it. So mentally, you have to be in the right frame of mind, you must accept first^. [Female, 45, public oncology outpatient] “I try not to get emotional. I try to keep myself busy. I do read the paper. I do the crosswords [pause]. TV, movies, videos, can also get me through. Go to the art class and we’ve got trivia on this afternoon. I prefer to not go

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Maintaining hope and developing emotional resilience

Mindfulness and detachment

Accommodating self-limitations and daily coping

Pressure of perpetual monitoring

Anxiety regarding accuracy of self-report

Urgency of decision making

Quotations the cooking class because I can’t have any of the food we’re gonna make”. [Female, 58, PC inpatient] “You’ve gotta love it out of your body, it’s your body and you’re in control and love it out of your body. Don’t hate it out of your body. I have a spiritual teacher that I talk to once a week or so. All that just sets me back into a much more comfortable space in my head’. [Female, 45, public oncology outpatient] BIt [the cancer] has got a right to live as much as I do, it’s a living thing just like in a garden, it’s just growing on the tree. I’m yelling out to it ‘you’re dying, you have to die and wither, because I have to survive.’^ [Female, 55, private oncology outpatient] “I am a very disciplined meditator. Whilst the symptoms physically are very serious, for me, it’s as much about the battle of the mind than anything else. It’s really exercising a fair amount of discipline of the mind, coupled with the help of deep meditation. My thinking has shifted towards a process of looking for healing, not just on a physical level, but more a sense of acceptance that these things happen without self-admonishment”. [Female, 60, private oncology outpatient] “On bad days, I feel really weak and really tired. But my philosophy is I know this is gonna happen. So you just go with the flow. Just take it easy. Just rest or sleep or whatever I need to do and then I know that tomorrow or the next day, I’m gonna be better”. [Female, 71, private oncology outpatient] “Coming here [to palliative care] has given me the opportunity to have a bit of a weep. I mean I’ve come to terms with it and what I need to do in order to get better. But I just need to let that out, sit down and bawl my eyes out for a good hour. And at the end of that time, I’ll feel fantastic”. [Female, 68, PC inpatient] Burden of self-management responsibility “It is stressful to take 13 tablets in the morning and 13 tablets at night, but I know that it’s being—it’s for my good. I find myself getting forgetful. I’m not young anymore. Forget a lot of things and I know that my mind is not also that efficient as it was. And so I have to rely on diaries, my phone, my iPad and so many things so I don’t forget”. [Female, 63, PC outpatient] BI take medication constantly for the bowel so I take something every day, every night. It’s a constant thing that I have to work out otherwise I’d get in to trouble. It’s a burden, totally a nuisance. It’s always on my mind. I have had a couple of nasty bouts where I passed out on the toilet and I’m terrified it’s going to happen again. It’s just on my mind all the time and I think, ‘Oh, God! I must not get constipated because it’s a very unpleasant thing’. It makes you anxious^. [Female, 83, private oncology outpatient] “Breathing would be my greatest obstacle at the moment. I can balance it where I don’t even need oxygen sometimes, but it’s a balance which I couldn’t put in terms of numbers or anything like that—just body-wise, I know. But that’s all I know from what I feel from the inside. I think they [doctors] rely not only on their education, but also on what the patient says… but that’s all she’s got to judge from, from what’s coming into her ears”. [Male, 81, PC inpatient] BI’m always monitoring myself, every hour, yes. I have a diary there to monitor it so I can’t forget. I think it’s good too when you come to the doctor and they ask questions. At least, you can answer and say when this happened or when that happened if you’ve got it written down in your diary because that’s what they’re interested in, how often it happens and what I did and what I took and all that. You’re just trying to say, BWell look, it changes every day.^ It’s not the same. It’s not like you chop off your finger and you’ve got a sore finger.^ [65 F, PC outpatient] BI’d definitely get the palliative care working, so that you get minimum pain and you can make better decisions. The consequences of becoming paraplegic were pretty frightening. But it would have been good to be given information about other options, because it would have made it much easier to say ‘no, hold the operation!’^ [Male, 59, PC inpatient]


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Quotations

Optimising management

“I have a set of rhythms in my life… not overly rhythmed, I watch that—but enough structure that propels you along each week so that you’re working your options and schedule in between pleasant things to do. Exercise is also a necessity, it makes you more positive. If you’re mobile and make yourself physically tired, then your sleep patterns do improve and becomes a lot deeper”. [Female, 55, private oncology outpatient] BI can tell the difference between symptoms due to disease and treatment. You become better at monitoring your body. Probably comes out of the fact that I have no control. And so, you just watch and things have sort of been—I like to call it sort of ‘stably unstable’. I’ve got a tumour at the moment that’s actually quite visible, so I use it to monitor how I’m going. And even if it’s not true I can, I realize it might not be true, but that’s my thing to hang on to. I guess it gives me a sense of control over it^. [Female, 52, public oncology outpatient]

Safety in coordinated care

Relief from professional validation

Fear of medical abandonment

Depending on family/social support

Valuing security and empowerment “Between the physiotherapist, the dietician, your oncologist, and just general doctors and nurses who you chat to—they work as a team and they all give you feedback and give you ideas on how to deal with it and how to cope with it; how to look after it, which is great. Instead of having people running all over the place, they’ve consolidated them all into an area. You couldn’t do it without them”. [Female, 61, PC outpatient] “If you trust your oncologist very well, which I do, and help yourself get out of the bad side, you can really survive and really get out of the misery. She was very quick to enforce the idea that we needed to have palliative care right from the get go. So how lucky am I that I have—I am with a team of people who see how important that is. Trust in them because if you don’t trust in them, you’re gonna go bad”. [Female, 79, private oncology outpatient] BThey [referring to health professionals] were just brilliant ‘cause they had that little thing that the others seemed to be lacking. They had compassion. And that’s something that you can’t really teach a nurse or a person. And an understanding. And empathy. I mean, you need all of that to walk through this journey^. [Female, 52, PC inpatient] “I’ve just moved into a new area so I don’t know that person, so most people I deal with are the five minute wonders that want to know symptoms, hand you a prescription and say goodbye and next. You’re in and out, because you don’t want to take up their time”. [Female, 69, public oncology outpatient] BI was a bit nervous through the whole thing [appointment with oncologist] to say too much, because I thought well maybe if I voice my opinion too much, they might sort of, umm, [pause] take it out on me, if you know what I mean? I guess sometimes I feel like because they say they can’t do anything for me anymore, I feel like I’m sort of, you know, like, ‘put her over there now, she’s lost’, you know like a lost cause, like ‘we’ve done all that we can, so let’s concentrate on someone now that we can help’ sort of thing^. [Female, 57, PC inpatient] “My husband, he is my carer and he’s the best carer you can have in the world. My mind is not so good. I forget things fairly quickly…I was getting frustrated. A lot of the journey is managing things very carefully. I guess, adjusting certain medications and adjusting the way you deal with the limitations that you now have. And if I didn’t have him, I don’t know what I’d do. Without him, I don’t know, I would’ve been long dead”. [Female, 73, PC inpatient] “My neighbours, yes. My daughter, she’s incredible… she just looks at me and knows what’s wrong with me and gives me the right quality of life…. And my son and my neighbours are [pause] fantastic. They’re in and out all the time”. [Female, 85, PC outpatient]

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Fig. 1 Thematic schema of the multiple symptom experience in advanced cancer patients

Multiple symptoms signify: Imminence of death/deterioration

Overwhelming loss of control

• Impending death

• Debilitating cycle of exhaustion

• Volatility/uncertainty

• Anticipatory fear

• Demoralised by helplessness

• Isolation/withdrawal

Impinging on autonomy and identity • Losing independence

• Refusal to succumb to a diminished self • Self advocacy for preserving quality of life • Reluctance to burden others In response:

Necessitating psychological adaptation

Burden of self management responsibility

• Accepting the impossibility of recovery • Perpetual self-monitoring • Ambiguity in self-report • Seeking distractions

Valuing security and empowerment • Safety in coordinated care • Compassionate care

• Maintaining hope

• Urgency of decision making

• Fear of medical abandonment

• Mindfulness

• Optimising management

• Dependence on family/social support

• Accommodating self limitations

Imminence of death and deterioration Constant reminder of impending death Participants believed that MSs signified imminent physical decline, which

triggered existential distress, particularly when the intensity of interacting symptoms reached a peak. Some participants in PC became hyper-vigilant towards symptoms as a sign that death was approaching. Interacting symptoms, particularly anxiety

Death Patients at this stage more likely to: • Focus on optimising daily coping with multiple symptoms • Acknowledge physical self-limitations and seek distractions • Accept the imminence of death and impossibility of recovery • Advocate for better end-of-life symptom control • Experience debilitating cycles of exhaustion and helplessness

PERSONAL challenges: • Confronting the volatility of multiple symptom burden • Hyper-vigilance toward multiple symptom interactions signifying impending deterioration • Increased self-management and selfmonitoring responsibility • Psychological adjustment to impending deterioration • Demoralisation and withdrawal

Patients at this stage more likely to: • Strive for a sense of normality • Engage in active self-management • Adopt an attitude of maintaining hope and optimism towards multiple symptoms resolving • Utilise mindfulness and hope fostering strategies to cope with multiple symptoms Increased vulnerability due to struggles with:

SYSTEM challenges: • Increased complexity and confusion in navigating multi-disciplinary environments • Discontinuity of care • Fear of being medically abandoned by health care teams and/or oncologist • Increased urgency of decision making

Fig. 2 Trajectory of adaptation as cancer progresses: a comparison of the multiple symptom experience when patients transition from oncology to palliative care


and breathlessness, brought about a constant awareness of mortality: ‘The way I see it is, I’m on a journey that’s the cancer… Now what the symptoms are going to be, will indicate it’s getting worse and worse, as I understand as a layman’. [Male, 80s, inpatient PC] Anticipatory fear of suffering Participants expressed fear, worry and trepidation that their MSs could increase and exacerbate one another, increasing their suffering. Some were concerned that particular physical movements might cause an increase of symptoms and suffering. Some patients expected that they would suffer from a cancer site ‘moving’ or ‘expanding’. Overwhelming loss of control Volatility and uncertainty of symptoms Many participants experienced an overwhelming loss of control due to volatile and unpredictable fluctuations in symptom interactions: ‘One thing leads to the next, which amplifies the other. Last night I needed to go to the toilet, but I also wanted to sleep. Going to toilet was painful and slow, then I couldn’t get back to sleep. I felt anxious that I wasn’t able to sleep’. [Male, 60s, outpatient PC] Participants often described this as a ‘rollercoaster’ of suffering. The intensity and number of symptoms could unexpectedly increase as symptom interactions occurred. Some were shocked by the sudden influxes of MSs, which became ‘big swings’ or ‘waves’ of fluctuating distress. Trapped in a debilitating cycle of exhaustion MSs were often overwhelming and chronic, which culminated in utter exhaustion for participants. They described themselves as being trapped in a ‘vicious cycle’ of fatigue and weakness, which were largely attributed to treatment-related side effects or interacting symptoms. Symptoms exacerbated each other, which resulted in more exhaustion. Many PC inpatients experienced this lethargy as a looming ‘black cloud’, which aggravated other symptoms. For the majority of patients, weakness and tiredness left them unable to do what they wanted, imposing increasing restrictions on their lives. ‘And then exhaustion comes to knock you for six, because you’re in a cyclic sort of situation of flushes, nausea, cold, diarrhoea, don’t want to eat, want to eat, it goes round and round… it’s sheer misery’. [Female, 60s, outpatient public hospital]

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Demoralised by helplessness Some participants were demoralised and resigned to their suffering of MSs, expressing a sense of helplessness, uselessness and inability to stop their bodily degeneration. Such demoralisation made them feel as if they were ‘sitting around’ hopelessly like ‘a log’ or ‘a big black gorilla’ waiting for the ‘big horrible green ball of muck’ of symptoms to subside: ‘This constant state of ill ease of nausea in my system when I was at my very worst and also feeling at my very worst in terms of a sense of helplessness, I combine all of that and it’s just this big horrible, big green ball of muck, and to me that’s the spot that I don’t ever want to go to if I can avoid it’. [Female, 50s, outpatient, private hospital] Some in the latter stages of their disease longed to be ‘released’ from suffering and desired hastened death. The ‘very worst’ psychological anguish and misery occurred when the build-up of their physical symptoms reached a peak, with many viewing depression, anxiety and demoralisation as inextricably linked to an increase in their interacting physical symptoms. Isolation and withdrawal from others A loss of control due to unmanaged or anticipated MSs led some to seek isolation and withdraw from others, particularly for those transitioning from oncology to PC. Some preferred to be isolated in their ‘own little world’ of suffering and turmoil. Others were selective, allowing certain visitors but avoiding others who ‘brought them down’ emotionally or offered ‘unwanted sympathy’: ‘I think the symptoms affect you because you’re so tired, wasted, and not function with any purpose. You feel cut off because you don’t really feel like relating to people. You feel so isolated, a bit useless in your own little world of going through discouragement’ [Female, 70s, outpatient oncology, public hospital] Impinging on autonomy and identity Losing independence The unbearable struggle, frustration and annoyance of losing independence and functioning as a result of MSs impinged on patients’ selfidentity: ‘The symptoms dehumanise you… I’ve moved from independence to total dependency, which is a bit of a struggle. It’s taken away my sense of control and autonomy’ [Male, 70s, outpatient PC]

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Others were frustrated with family and friends who watched over them ‘all the time’ as this diminished their sense of autonomy. Some inpatients felt uselessly ‘trapped’ by their symptoms, as if ‘in prison’, or became intensely frustrated at being no longer able to do simple tasks.


perceived as vital to adaptation, regardless of stage of disease or setting: ‘The idea of surrendering, in order to come back up, you have to go down into the vortex. It’s a case of adjustment you see… Mentally you just have to accept the culmination of the whole lot [of symptoms]. I’ve got to learn to live with it, just taking a day at a time’. [Female, 50s, outpatient private hospital]

Refusing to succumb to a diminished self Participants had a drive to preserve their dignity, refused to have their self-worth diminished and did not want to be victims of their symptomatic body. Many oncology outpatients constantly strived for a sense of normality to prove that the symptoms were not ‘taking over’ their lives, for example through continuing part-time work or volunteering. Palliative patients protected their selfidentity by tending to their physical appearance and displayed appreciation of others’ validation of their outward sense of health and vitality.

Seeking distractions Some participants sought comfort by seeking distractions, such as spending time with others and engaging in hobbies. ‘Mindless’ activities served to divert them from negative thoughts. For example, watching television was ‘an escape’ which helped some to ‘turn off’.

Self-advocacy for quality of life Some advocated for better symptom control. Many were determined to ensure optimal quality of life by trading off treatment-related side effects against a shorter life. Some said ‘I set myself up’ for this through advanced care planning. They preferred to be autonomous rather than to extend their life.

Maintaining hope and developing emotional resilience In an endeavour to preserve hope for symptom relief, many made a conscious decision to stay emotionally resilient, adopt a positive attitude and engage with PC. This required ongoing ‘mental effort’ and determination in the face of physical suffering:

Reluctance to burden others Participants were reluctant or afraid to psychologically burden family or friends with their distressing symptoms and day-to-day misery, preferring instead to put on a brave face or to ‘bottle in’ their suffering to protect others. Others refused to ‘bore people to death’ by telling them about ‘symptomatic stuff’:

BMental is within my control and that’s where I’m strong and I’m lucky there, and I’m positive. But physically, a lot of that can be out of your control, and you want to do things but your body can’t. I tell myself, ‘You will get through the days, you’ll gradually get a bit better or turn that corner.’^ [Female, 60s, outpatient, PC]

‘You can’t bore people to death sitting there telling them about your misery. It’s important to try and let people know what’s going on, but on the other hand, it’s not so valuable to weary yourself as well as other people by having to listen to symptomatic stuff…’ [Male, 80s, inpatient PC]

Some personified the cancer by talking to it or imagining ‘loving it out of my body’, which then helped to cope rather than remain ‘wound up in my body, fearful of every ache and niggle’. Many maintained a strong spiritual faith, whilst others, particularly those in oncology settings, preserved hope by avoiding ‘negativity’, such as refusing to engage in PC. However, others strived to understand the pathophysiology of symptom interactions to gain a sense of control and hope to mitigate worry about future symptomology.

Those who were independent, autonomous and ‘stoic’ in their response to suffering found it more difficult to accept or ask for help from HPs and family. Necessitating psychological adaptation Accepting the impossibility of recovery MSs necessitated psychological adaptation, adjustment and personal acceptance of the impossibility of recovery. Participants earlier in their illness trajectory tended to describe a fluctuating tension between acceptance of their impending deterioration and misery caused by MSs, leading to feelings of unfairness, anger and ‘why me’ questioning. The culmination of MSs triggered a gradual awareness of the need to make ‘mental adjustments’ and ‘let go’ of fear regarding the natural course of dying,

Mindfulness and detachment Many practised mindfulness by engaging in activities that required deliberate attention to the present moment, such as guided meditation, gardening or painting. This enabled them to detach themselves from their symptoms, fostering an ‘ongoing awareness, acceptance and peace of mind… without self-admonishment’. Accommodating self-limitations and daily coping Participants accommodated their increasingly intense physical limitations by learning to focus on daily coping, refraining from future-oriented thinking by ‘taking one day at a time’, setting


short-term goals, accepting help from others and setting realistic expectations and goals: ‘Just don’t expect too much of yourself. And if you’re too tired to do something, you’ll have to ask someone else to help you, and handle it day by day. When I’m not having a good day, I don’t worry, I just go hop into bed, I don’t overdo it’. [Female, 80s, inpatient oncology, public hospital]

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increased the pressure and urgency of decision making and negotiation. Some felt the decisions made under time pressure were not optimal.

Many expressed their emotions by talking to others or crying. One inpatient described how entering PC created an ‘opportunity to weep’ and vent her emotions.

Optimising management Many patients accepted, took pride in and gained control from balancing, ‘tweaking’ and managing MSs to maximise their well being. Many felt proud of being able to distinguish between MSs due to the disease or active palliative treatment. However, overlapping symptoms exacerbated by polypharmacy resulted in dilemmas regarding which symptoms to ‘trade-off’. Many patients were proactive in applying daily structures and routines to motivate themselves.

Burden of self-management responsibility

Valuing security and empowerment

Pressure of perpetual monitoring Participants were plagued by a burden of responsibility for perpetual selfmonitoring to ‘keep on top of’ symptoms, particularly for those transitioning from oncology medicine to PC. For example, one participant described the effort, discipline and concentration required to monitor symptoms often amplified them, especially if they felt their symptoms were unmanageable to begin with:

Safety in coordinated care Participants needed to feel ‘held’, safe and secure by a coordinated, multi-disciplinary team who managed their symptoms, particularly when navigating different health sectors and when they transitioned from oncology to PC. Collaborative care and communication amongst HPs were highly valued. Most wanted continuity of care and to be seen by ‘one person, like a maypole’, for the delivery of coordinated patient-centred care, because they often felt confused by contradictory advice from different specialists. Referral to a PC setting and the sense of safety this brought was highly appreciated by most:

‘I find that there’s so many things to think about. There’s pills to take and puffers to take. It’s like bringing home a new baby… it’s pretty overwhelming, the responsibility that’s involved in keeping watch I guess. I wanna give up…the effort of managing my symptoms’. [Female, 70s, outpatient PC]

Anxiety regarding accuracy of self-report Many feared they would incorrectly report symptom intensity to HPs or forget to bring up recent symptoms, due to day-to-day fluctuations. Some found the process of quantifying subjective multiple symptom experiences onerous and were anxious about how their responses were interpreted by HPs. For example, one participant remarked that doctors only had their ‘ears’ to judge how he felt ‘from the inside body-wise’, which he struggled to ‘put in terms of numbers’. Some prepared diaries in advance or self-monitored using electronic devices to report their symptoms as objectively and accurately as possible, especially at the later stages of advanced cancer when they were undergoing fewer investigations. Urgency of decision making Many patients transitioning from oncology to PC reported a sense of urgency in decision making about treatment or symptom relief, especially when they were given frightening consequences of inaction, such as ‘becoming paraplegic’. Symptoms such as pain, fatigue and medication-related side effects

‘Outside, at home, I can’t be normal anymore. I’m always sick and sitting down, nothing to do. Whereas here [in PC], you’re looked after. You have people around you that work as a team and they all give you ideas on how to deal with it and how to cope with it, which is great. You feel safe. I just feel better in myself, secure’. [Female, 50s, inpatient PC] Appreciating compassionate management HPs who were perceived to communicate with deep compassion, empathy, hopefulness, trust and ‘humanness’ caused participants to feel empowered, reassured and secure: ‘They’re managing your symptoms probably as best they can, but I’d say if there are any problems, it’s down to whether you’re listened to or not. That comes down to the staff—whether they want to understand what I’m trying to say to them, and whether the doctors and nurses talk to you in a more human way’. [Female, 69, inpatient public oncology] Some wanted clinicians to validate their suffering without judgement. However, others felt invalidated, powerless and like ‘just a number’ or ‘a mere mortal’ if they failed to experience such care.

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Fear of medical abandonment Participants were fearful of being perceived by HPs as weak, taking up too much of their time or ‘crying wolf’ regarding the intensity of their symptom distress, which they thought would jeopardise their care. Some described feeling hurt and disempowered by ‘in and out, 5-minute’ general practitioners who they believed displayed a dismissive and hurried attitude towards managing their MSs. Others transitioning to PC worried their oncologist would abandon them. Depending on family and social support Participants were deeply dependent on emotional support from family and social networks, which assisted them to psychologically adjust to their illness experience. In particular, participants near the end of life discussed feeling safe, empowered, peaceful and motivated to accept their suffering of MSs if their carer, usually their spouse, children or best friend, was supporting them mentally.

Discussion In this study, we explored the multiple symptom experience of a group of advanced cancer patients from both oncology and palliative-based settings. Perceived multiple concurrent symptoms Patients rarely experienced symptoms as isolated entities but clearly recognised symptom interactions as meaning-laden experiences, often signifying the imminence of death, in line

Table 3

with Armstrong’s model [16]. Furthermore, our findings suggest interactions between concurrent symptoms represented an overwhelming loss of control that culminated in exhaustion, impinged on autonomy and increased patients’ hypervigilance towards to further suffering. The responsibility of self-management, including the process of perpetually monitoring and quantifying subjective symptom experiences to HPs, was seen by many patients regardless of their stage or setting as burdensome and anxiety-provoking. Those in the earlier, middle and later stages of advanced cancer psychologically adapted, self-managed and coped differently with MSs depending on their perceived level of control over, acceptance of and adaptation to interacting symptoms (see Fig. 2). Although previous studies [22–24] have also alluded to the trajectory of adaptation as cancer progresses, our results provide more depth and specificity in this instance to Armstrong’s model that the perception of multiple symptoms influences patients’ adjustment to illness. Qualitative studies have reported meaning to be a greater predictor of symptom burden than symptom frequency, severity or distress [8, 13, 25, 26], supported by our findings. Furthermore, a sense of loss of control and hyper-vigilance [11, 13] towards symptoms have been shown to activate increased distress regarding cancer’s threat to life [27], diminish patients’ coping mechanisms [28] and induce a transient sense of ‘living whilst dying’ [16, 29, 30]. Transitioning to end-of-life care has been documented to be a confusing time of mixed messages, fear and misunderstanding, and uncertainty for advanced cancer patients [13, 31, 32], consistent with our findings of differences across the advanced cancer trajectory.

Strategies and recommendations to address multiple concurrent symptoms from the patients’ perspective

Health professional

Health system

Regular assessment and management of: • Subjective meaning associated with multiple symptom interactions, to prevent spiral into hopelessness and isolation • Patients’ psychosocial adjustment to ongoing multiple symptom fluctuations • Vulnerable subgroups, e.g. patients transitioning from oncology to palliative care, patients experiencing self-management burden and fatigue • Patients’ causal attributions about symptom interrelationships

• Patients’ accuracy of self-report

• Early referral and integrated care from time of diagnosis, to empower patients and assist with maintenance of dignity and autonomy • Education and communication training in symptom cluster assessment and management for health professionals • Greater continuity and coordination of care by promoting patient security and empowerment • Implementation of acceptance-based, meaning-focused and/or cognitive-behavioural psychological interventions to target hyper-vigilance/anxiety towards symptoms, demoralisation, a sense of loss of control and psychosocial concerns at the end of life • Clinical pathways that are relevant to patients in different settings, e.g. an earlier focus on self-management and mindfulness for patients in oncology settings, and a later focus on managing fatigue and coping with everyday tasks in palliative settings


Perceived management Patients in our interviews urged for a compassionate multidisciplinary team who conveyed a sense of security, empowerment and hope through symptom relief. The advantages of oncologic and palliative co-management have been well documented [10, 33–35]. Reviews of specialist PC have also highlighted a lack of training on communication skills at the end of life and standardised referral to PC [36–38]. Our results support the need for PC to be fully integrated ‘upstream’ within the mainstream curative healthcare system and the imperative for HPs to connect on a ‘human level’ with PC patients [39, 40]. Implications The clinical implications of our findings are displayed in Table 3. It might be helpful for future symptom management pathways to address both patients’ causal attributions of symptom interactions and their psychosocial concerns connected with physical symptoms. Clinicians could consider multimodal interventions to concurrently target symptom interactions that are of greatest meaning to patients. Fatigue seems to be especially burdensome as it impacts patients’ ability to manage other symptoms, function and therefore independence. Close attention to management of fatigue [41, 42], with exercise and correction of reversible factors, is vital. Mindfulness and acceptance-based strategies [43], as well as meaning-focused therapies [44], may assist with the hypervigilance and existential concerns that can accompany multiple symptom fluctuations. In addition, our results suggest that symptom cluster interventions would benefit from routinely targeting vulnerable subgroups, particularly those transitioning from oncology to palliative care, to be supportive of their adaptation over time. To ensure continuity of care, early involvement of palliative care [45], particularly for symptom management, should be an integrated component of care for oncology patients even if end-of-life planning is not. Training in the assessment and management of both symptom clusters and psychosocial issues such as anxiety and demoralisation, which have been emphasised in previous studies [34, 35], would be essential. The current capacity of Australian oncology and palliative care services for tackling patients’ multiple concurrent symptoms may depend on system changes that prioritise coordinated symptom management strategies.

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Caregivers were not explicitly interviewed and oncology patients’ transitions into PC were not followed up, which are areas for future research. Strengths include theoretical saturation achieved across groups, purposive sampling of patients at different stages and the inclusion of interview questions designed to prompt retrospective recall of symptom interactions over time. Given the distress at the time of transition to PC, our results support early referral and integrated care from time of diagnosis of advanced cancer to reduce patients’ fear of abandonment, demonstrate excellence in care coordination, empower patients to maintain dignity and autonomy, and allow early management of symptoms to prevent the spiral into hopelessness and isolation. Patients ultimately need to feel empowered, secure and competent in self-management and at peace with adapting to the transition to the end of life. Acknowledgments We would like to thank the following people for their generosity in assisting with recruitment: A/Prof. Phillip Beale, A/Prof. Josephine Clayton, Dr. Megan Best, Dr. Belinda Kiely and Dr. Prunella Blinman. We would like to deeply thank the patients who participated in the study. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Conflict of interest The authors declare that they have no competing interests.

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