Sage Journals: Discover world-class research

Abstract

Background:

Although palliative care embraces person-centred principles and autonomy to meet patients’ holistic needs, autonomy is not automatically assured and few studies cover patients’ lived experiences. Consequently, current thinking about dying and palliative care practices would benefit from an in-depth understanding of patient experiences. Such research provides an opportunity to challenge assumptions about patient preferences for the amount and type of care and decision-making involvement, especially for the way patient preferences may vary between individuals and change through the palliative care process.

Objectives:

This project aimed to investigate patient conceptualisations and preferences for autonomy while receiving palliative care.

Design:

This qualitative phenomenological study explored patients’ experiences of autonomy in home-based palliative care in Queensland, Australia.

Methods:

Face-to-face semi-structured interviews were audio-recorded with two participants to learn their perspectives regarding autonomy in palliative care. Transcripts were analyzed using interpretative phenomenological analysis.

Results:

Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals’ wishes for autonomy.

Conclusion:

Partnering with individuals receiving palliative care provided authentic insight into their level and experience of autonomy. While many health practitioners aim to facilitate autonomy in patients receiving palliative care, flexibility is required to recognise variable patient needs. Such approaches will further ensure autonomy moves beyond a singular view of healthcare decision participation, to encompass changes to preferences during palliative care, while recognising how patients exercise autonomy via self-assessment and coping mechanisms.

Trial registration:

Not applicable.

Keywords

patient-centred care palliative care decision-making choice autonomy healthcare ethics

Introduction

Patients suffering severe illness and end-of-life circumstances usually face complex healthcare decisions whilst experiencing reduced physical and mental capabilities, along with heightened awareness of mortality.^1,2 In these situations, patients often experience a diminished sense of autonomy, psychological distress and deteriorating quality of life.³ Palliative care is a holistic approach to support such patients in dealing with physical, psychological, social and spiritual challenges to enhance their quality of life.⁴ Palliative care is usually offered after a diagnosis of a life-limiting illness and is globally recognised as a human right.⁵ In 2021, over 58,700 Australians received palliative care.⁶ It can extend for months, distinguishing it from end-of-life care, which covers the time when death is imminent.⁷

The World Health Organization⁸ prescribes person-centred care principles for implementing palliative care. Person-centred care holistically addresses patients’ and caregivers’ needs, consistently enhancing trust, safety, and patient and staff satisfaction.⁹ Patient autonomy is essential to person-centred care, but it lacks a uniform definition. In the palliative care context, autonomy is commonly guided by Kantian ethics, which recognises both the patient’s right to make informed decisions and the influence of personal experiences and cultural contexts.^10,11 Despite growing research, the understanding of patient autonomy in palliative care is limited.¹² The exemplars presented here explore two patients’ lived experiences of autonomy during palliative care. In doing this, we adopted a primarily Kantian definition of autonomy, recognising that autonomy is owned by each individual and may change depending on circumstances.

Autonomy in person-centred care

Person-centred care is fundamental to high-quality healthcare, focusing on respecting and valuing patients’ preferences, needs and values.¹³ It aims to improve patient wellbeing by adhering to principles of dignity, respect, compassion and personalised care.¹⁴ Despite its importance, implementation of person-centred care often lacks sufficient support for personalised care plans, regular plan reassessments and patients’ active participation in multidisciplinary teams.^15,16 Moreover, the tension between patient choice and “good care”¹⁵ means respecting autonomy in patient-centred care is complex. Effective communication among, and ongoing education for, healthcare professionals and patients are essential for enhancing care quality through feedback.¹⁴

Autonomy is derived from the Greek αὐτός (autos: “self”) and νόμος (nomos: “law or governance”).¹⁷ It is historically related to self-governance and was refined by the philosopher Immanuel Kant, who emphasised a moral right to self-determination.¹⁸ While Kantian autonomy traditionally assumes patients’ preference for comprehensive information, broader and contemporary views allow patients more control over the degree of information they receive and their decision-making involvement, accommodating cultural diversity.¹⁹ Autonomy encompasses more than clinical outcomes, integrating broader life aspects, such as patients’ moral and emotional needs during palliative care.^20,21 Today, Western medical ethics lists autonomy along with justice, beneficence and non-maleficence as fundamental ethical principles.^22,23 This framework of ethical principles has come to profoundly inform and shape ethical thinking and practice in healthcare, and respect for autonomy is fundamental to ethical conduct. This principle informs our exploration of autonomy in these exemplars.

Importantly, autonomy is not absolute – individual rights are modified by “social responsibilities and communal goals” (p. 11).²³ This is not a concession to pure relativism, but an acknowledgement that this principalism underpins and informs self-determination in contexts of complex healthcare decision-making. Beauchamp and Childress²³ identified a derivative rule of veracity – that is, truth-telling – and it is observed that autonomy can be undermined by paternalistic practices where decisions are made for patients.²⁴ However, it can be argued that adjustments to the extent of truthful information shared by healthcare professionals with patients at those patients’ request are ethically defensible. As noted above, this could be related to cultural practices or individual preference.²⁴

Truth-telling is a critical consideration in palliative care regarding the sharing of medical information and its impact on patients, especially regarding their diagnosis and prognosis.^25,26 Autonomy, as it relates to truth-telling, includes patients’ right not to engage in truth-telling,²⁷ a deliberate preference not to know about their medical situation. However, ethical guidelines for disclosing end-of-life information are underdeveloped.²⁸ Furthermore, understanding patients’ truth-telling experiences is limited. Only Bergqvist and Strang²⁹ investigated the patients’ perspectives and found that Swedish breast cancer patients exercised their autonomy by avoiding negative news and engaging less in decision-making as their condition progressed, meaning patients relied on their doctors and support systems to maintain hope and optimism. Yet, Testoni et al.³⁰ found that not disclosing truthful information strained Italian palliative care nurses’ relationships with patients, which may cause an emotional burden on the nurses. While avoiding truth-telling may impact healthcare professionals and family members, the benefits of telling patients the truth and possible coping strategies have yet to be investigated from the patient’s perspective and their expectations of truth-telling.

Essentially, autonomy can be viewed as a spectrum,³¹ influenced by individual factors and changing needs throughout the palliation process, emphasising the need for a flexible, person-centred approach in palliative care. There is a substantial deficit in the literature that includes patients’ voices, with few studies conducted specifically on patients’ experiences of autonomy.¹² Accordingly, we review research that has been conducted about patients, often told from the perspective of healthcare professionals and carers. We review this work with the goal of understanding how these studies can lead to increased patient autonomy.

In palliative care studies, autonomy is observed through exploring loss of control, truth-telling, decision-making and advance care planning. These prevalent concepts show the importance of patients’ experiences, including how they handle information about their conditions. However, changes to their wishes for control through illness progression are less well understood³²: Palliative care patients who do not feel a sense of control are likely to have poorer health outcomes.^33,34 These needs have also been observed in terminal cancer patients, whose sense of control was also affected by factors such as future uncertainties and healthcare, impacting wellbeing, and the ability to adjust expectations.³⁵ While positive outcomes of exercising control are observed, little is known regarding control for palliative care patients, and how autonomy needs change because of illness progression. Research focusing on the lived experiences of palliative care patients may provide insights into patients’ control-related autonomy levels during palliative care.

Further, in palliative care, decision-making involves patients, families and healthcare professional teams with diverse views on autonomy.³⁶ Pereira et al.³⁷ found consensus and inclusivity essential in these decisions and that healthcare professionals closely followed Europe’s medical guidelines. Yet, there are cultural differences in the appropriateness of decision-making, with Western cultures, in which the present research was conducted, often protecting the right of the patient to possess information and make their own decisions.¹⁵ This may even vary by stage of life: Gerber et al.³⁸ highlighted how older adults might delegate decision-making to others, significantly affecting family dynamics with denial and intrafamily conflicts during medical crises. These studies underscore the need to recognise diverse perspectives of autonomy and adapt decision-making accordingly. We found very few studies of patient involvement in decision-making in palliative settings.

Aims

This research asks: “What are patients’ experiences of autonomy in palliative care?” These exemplars aim to expand knowledge of and insights into individualised approaches to patient autonomy.

Method and methodology

Participants

The participants were two individuals receiving home-based palliative care services in Southeast Queensland, Australia. Although multiple recruitment methods were employed, including direct referrals from health services, advertising on social media and third-party approaches, recruitment produced only two participants over a period of 7 months, with no further recruitment time available. Both participants were recruited via referral from Nurse Practitioners from the same organisation via convenience sampling. One additional participant consented to be contacted but declined to participate. Both participants met the inclusion criteria: palliative care patients aged 18 years or older; sufficient English language skills to understand consent procedures; were willing to share their experience in palliative care; and not diagnosed with dementia or experiencing persistent confusion. Details are shown in Table 1.

Table 1.

Characteristics of the participants and length of the interview.

Participant^a	Sex	Age	Diagnosis	Stage of palliation	Marital status	Interview length
Roy	M	84	Prostate cancer with metastases	Deteriorating	Married	47:59
Frank	M	77	Gastric cancer with metastases	Stable and deteriorating^b	Married	59:37

Participants were allocated a pseudonym to protect their privacy.

Patients can move between stable and deteriorating stages of palliation, meaning, at the time of the interview, the patient’s symptoms were well-controlled, although his illness was progressing.³⁹

Design

Audio-recorded semi-structured interviews in participants’ homes were used to capture patients’ perceptions of autonomy in their palliative care experiences. Conducting interviews enabled co-creation of understanding with participants by moving flexibly as they shared their experiences: asking questions, seeking clarification, taking pauses when participants needed a break and confirming understanding of participants’ unique experiences throughout. This required an idiographic (seeking to understand nuance) rather than a nomothetic (seeking to generalise⁴⁰) approach.³¹ Accordingly, we coded and analysed interview data using interpretative phenomenological analysis (IPA). IPA is an inductive analytic method that closely examines individuals’ lived experiences and how they interpret these experiences within their social and personal contexts.⁴¹ IPA can be conducted with as few as one participant and rarely with more than 15.⁴²

Researcher background and positionality

The research team comprises two women educated in psychology (K.T.: PhD; J.S.: Bachelor’s Degree with Honours; this work comprised her final thesis) and one man educated in nursing (J.R.: PhD, Registered Nurse), with extensive clinical experience in palliative care. K.T. and J.R. are employed as teaching and research academics in psychology and nursing disciplines, respectively. K.T.’s methodological experiences are as a pragmatist and phenomenologist; J.R.’s methodological experience is as a phenomenologist. Both were born in Australia. J.S. is a Brazilian-born woman who has lived in Australia for many years. The authors have had varying involvement with palliative care for people personally known to them, especially for J.S. whose sister received an advanced cancer diagnosis 1 year after J.S. began studying psychology. Her sister died halfway through this research. During this time, J.S. witnessed palliative care barriers and facilitators and developed a deep personal understanding of palliative care from the family’s perspective. These lived experiences enriched data collection and analysis, allowing J.S. to build rapport, empathise with participants’ experiences and generate insightful knowledge.⁴²

The team’s axiology is deeply rooted in personal experiences with loss and palliative care, fostering a strong sense of empathy and commitment to enhancing patient support.⁴³ Ontologically, we perceive reality as a combination of subjective experiences and objective conditions, valuing the insights from individuals’ lived experiences.⁴⁴ Epistemologically, we adopted a constructivist approach, viewing knowledge as co-constructed through interactions with participants, which enables us to derive rich, nuanced understandings grounded in their realities.⁴⁵

Materials

The interview topic guide (see Supplemental Material) was developed initially by J.S., then refined in collaboration with K.T. and J.R. The topic guide was reviewed by an experienced palliative care nurse, who provided feedback for further refinement, after which point the topic guide was submitted for ethical review.

Procedure

Audio-recorded interviews were conducted in the participants’ homes by J.S. The participants completed a single interview each, within a single session. In order to remain present and engaged with the participants, the interviewer made notes after but not during the interviews. These notes were included in discussions with the broader team, but not as part of the data to be analysed. Both participants had family members present in the home at the time. One participant’s wife was in the home and occasionally engaged with him during the interview. The second participant’s wife was present for most of his interview and engaged in the conversation. Family members’ engagement was not included in any data analysis.

At the beginning of the interview, participants were asked about their perspectives on and experiences of autonomy in palliative care. If the participant could not readily answer the first question of what autonomy meant to them, the interviewer offered a description, provided in the topic guide and asked their perspectives on that definition.

We intend to undertake member checking in the form of a verbal summary of the interview based on J.S.’s understanding of the narrative. However, in practice, this was not offered; one participant summarised the interview himself, and the other participant became fatigued, making it inappropriate to continue. Participants were not invited to review the transcripts as the nature of this research focussed on the participants’ experiences at the time of the interview.

Data analysis

All data were coded with pseudonyms and were not linked to identifiable information. Preliminary coding of a subset of the first interview was conducted by J.S., reviewed by K.T. and J.R. and discussed by the whole team, before J.S. completed the remaining coding using manual annotation and Microsoft Word documents. Themes were initially developed by J.S. and reviewed and refined by the team in iterative cycles. Although many qualitative research projects aim for data saturation, the function of saturation is often to seek a fullness of ideas across participants. Phenomenological studies are concerned with understanding individual experiences more closely, in questions which can essentially be bottomless⁴⁵ and through which we might only gain a specific understanding of a participant’s interpretation of their experience at this moment in time; as such, we did not consider saturation to be an appropriate objective for this study design and analytic strategy.

Results

We developed four themes of experiencing autonomy from the IPA of the interview transcripts (Table 2): (a) my involvement in healthcare decisions; (b) change to my autonomy during illness progression; (c) self-assessing my abilities to exercise autonomy; and (d) my coping mechanisms for loss of autonomy. These themes, 11 subthemes and sample quotes are shown in Table 2.

Table 2.

Group experiential themes.

Group Experiential Theme 1: My involvement in healthcare decisions

1a. Advocating for myself with healthcare professionals

Frank: Specialists seem to be well think their work could above everybody else. But once we cleared the air, I found that they were bending over backwards to help me

Frank: Don’t talk about me. Talk to me

Frank: I said excuse me, sir. Talking to me. I want to know what you’re saying. Good. And you know, he looked at me, and he said, you know, you’re right

1b. Give me enough information

Roy: Tell me enough to keep me upright as long as I can, because I don’t know that I’ve got that many years left to keep me upright. Other than that, I don’t know

Roy: A little while ago, I wanted to know what the hell was going on in my body. . . seem to be going downhill real quick. . . given [my] driver’s licence, because I wasn’t sure how much further downhill I was going to go

Frank: I want to know how it affects me. Why it affects me and what I can do to be part of that team to get rid of the issue. Change my lifestyle

1c. Involvement in decision-making

Roy: I show them what [cancers] they’ve got to take off. . .So, I’m still sort of making half the decisions about what I feel we’ve got to take out

Frank: There are times when they tell you something, and you don’t agree with it. But I look at it and the fact that they’re doing the best they can

Frank: You tell me to jump, and you tell me what you want. And what’s good for me. Well, get on it

Frank: You make your own decision. Sometimes you fight the mob, the Navy, the army, the thought, you fight them for what you think is right

1d. Desire to make decisions when approaching the end of life

Roy: Decisions that you want to make when you get close to falling off your perch. And I said I would like to be able to make decisions on my own. If I can’t wipe me bum, I don’t want them anywhere near me

Roy: She [daughter-in-law] asked me the questions [for planning my future], and I told her the answers, and this is what I wanted. If they couldn’t read this, they can go away and I’ll get somebody else that can read it. So that was the way it was

Group Experiential Theme 2: Change to my autonomy during illness progression

2a. Loss of control

Roy: So I’ve been getting some cancers cut out lately, and that’s not a pleasant feeling. So, I’ve had, you know, I’ve got the cancer that’s in the body that they can’t cut out

Roy: And I don’t think it will take real long for this to take over my life

Roy: Going downhill too quick for my likings

2b. Adaptation to the impacts of changes

Roy: It’s sort of eased off now. But now that the boys [testicles] have swollen up like they have that’s another thing which is slowing me down. Story of me life

Roy: If I got too physical with it. . . that would affect me

Frank: If I feel exhausted. I have to lie down. If I feel in pain, I have to take the right medication. If I feel lonely, which is another side effect, get on the internet [support group]

Frank: A mental thing than a physical thing because there are things you cannot do anymore. You’ve got to switch on and say okay, I can’t do that when I do this. What I do is . . . I get up I’ve always been an early rise out of bed by five sometimes earlier than that do an hour go back for rest get a breakfast and I’m finding that by working that one hour I have this in mind I’ll give myself a target every day. Then do another rest

Roy: I can’t do a lot of things anymore. One of the things I like to I used to like to do because I was in the building trade for 60 years. And I used to be able to do a lot of this sort of stuff. Now I can’t

Frank: As far as give myself a target every day. Even if it’s only just veggie garden or walking around the garden. I can’t run any more. I just do what I can around the house. Do my own washing, fold it. [If] the wife’s washing is there then I will do that

Frank: And I got in the cancer side of it. Very big. Looking for info, for answers

Frank: I’ve had to adapt my lifestyle to suit my body

Frank: I’ve got it, have it. Let’s get on with it

Frank: Now I find that if, in the morning when I wake up, I just can’t do it. Not today. I stay there. That’s cool. Because it might. Yeah, it’s telling me, and it makes them pleasant for anybody around me. To see me floating around like, no man. Although I am

Group Experiential Theme 3: Self-Assessing my abilities to exercise autonomy

3a. Maintaining cognitive functioning

Roy: I think the marbles that are up on the top here. I’ve got to give him a pat every now and then to say you guys, anybody home up there?

Roy: Try and keep on top of the brain

Frank: And they were gobsmacked. How I look, how I feel, how my brain tics over when I speak. Because if there’s anything wrong, I will tell them

3b. Maintaining independence

Roy: I collapse behind the steering wheel. . . I can’t go out onto the highway with this sort of situation hanging over my head. So yeah, I have to give this a miss. I haven’t been driving ever since

Roy: They didn’t. . . just one of those things that I’ve decided I don’t want. . . causing an accident and killing a lot of people, myself included

Roy: I realise what I’ve done by handing me licence in because it’s a hard decision, so just got to be careful

Frank: I like the sort of independence, which is my major driving force

Group Experiential Theme 4: Coping mechanisms for dealing with loss of autonomy

4a. Positive mindset

Roy: The light at the end of the tunnel is that I can probably go to bed at night and with a bit of luck wake up in the morning

Roy: If see the light at the end of the tunnel I might be able to think to myself well with a little bit of luck you might be able to have a beer before you fall off the perch which it would be nice

Frank: I will still be here at 200

Roy: Keep the light on at the end of the tunnel

Frank: You go through rough weather, and the other side is sunshine

Frank: Medication came in in a big way was on 40 tablets a day just to stay alive. Reduce now 11 a day that’s a big step

Frank: The only way I could survive is by being positive

Roy: All the towns and cities and all that sort of stuff. We went to

Frank: We always went to the first-day test match. . . It’s fun. Oh, it was it really was

4b. Being generous to others

Roy: Hopefully, the boys can do something with it

Roy: Because there’s a lot of things down there that I cannot do anymore. And I want them to go to a good home

Frank: I run a little Facebook for people who had cancer got cancer so they can just come in and tell these stories

Frank: If it’s a problem in the family, I’m in the car down there

Frank: Sense of pleasure that you’ve helped somebody, and you can see them go forward

4c. Recognising and accepting the need for support from others

Roy: Without her, I wouldn’t be here

Frank: He texts me, emails me, every day. Never misses it, he’s a good friend

Frank: With the support I’ve got that means the world to me

Frank: So it does mean a lot to me. And as I say, with the support I’ve got from family, friends. . . My wife care is my carer full time, and she does a wonderful job

Frank: And the only way you can cope with it is talking to somebody

Roy: I’ll have me office girl here to look after me all the way through to the end

Frank: They treat you like a special person

Theme 1: My involvement in healthcare decisions

Involvement in healthcare-related decision-making processes is closely related to autonomy in healthcare. Four subthemes were developed: advocating for myself with healthcare professionals, give me enough information, involvement in decision-making and desire to make decisions when approaching the end of life.

Advocating for myself with healthcare professionals

Only Frank exercised autonomy by using clear communication and self-advocacy, transforming the dynamic with the healthcare specialists into a more collaborative interaction and a stronger focus on him as a patient: “Specialists seem to, well, think their work could [be] above everybody else. But once we cleared the air, I found that they were bending over backwards to help me.” Additionally, Frank achieved involvement in healthcare discussions by using assertive statements to advocate for respect, inclusion and recognition of his autonomy and right to be fully engaged in decisions affecting his health: “Don’t talk about me. Talk to me.”

Give me enough information

This subtheme explored how much information the participants wanted to receive about their health situation. Roy wanted sufficient information to make informed decisions about his health and maintain quality of life; however, a limited amount to keep his hope alive: “Tell me enough to keep me upright as long as I can, because I don’t know that I’ve got that many years left to keep me upright. Other than that, I don’t know.” His uncertainty suggested a need for clarity without overwhelming him with details that could diminish his optimism. In contrast, Frank wanted to receive comprehensive information about his health condition to understand the underlying causes, personal impact and actionable steps for a proactive approach to his health. This empowered him to make informed decisions and actively participate in his treatment plan, reinforcing his autonomy by taking control of his health and making necessary lifestyle changes: “I want to know how it affects me. Why it affects me and what I can do to be part of that team to get rid of the issue. Change my lifestyle.” For each of these men, the idea of “enough” information was relative and individual.

Involvement in decision-making

Participants exercised their autonomy through their level of decision-making involvement with healthcare professionals. Roy told the doctors what skin cancers he wanted removed and contributed to decisions about his care by collaborating with healthcare professionals, maintaining a level of control: “I show them what they’ve got to take off. . . So, I’m still sort of making half the decisions about what I feel we’ve got to take out.” To Frank, actively engaging in critically assessing his healthcare needs was fundamental. Despite rare disagreements with healthcare professionals, Frank respected their medical expertise and believed that specialists should make decisions: “There are times when they tell you something, and you don’t agree with it. But I look at it and the fact that they’re doing the best they can.”

Desire to make decisions when approaching the end of life

Only Roy showed a desire to retain control over his life and dignity by making personal choices and setting boundaries regarding the level of care he is willing to accept when approaching the end of his life: “Decisions that you want to make when you get close to falling off your perch. And I said I would like to be able to make decisions on my own. If I can’t wipe me bum, I don’t want them anywhere near me.” Furthermore, Roy used an advanced care directive to express his autonomy: “She asked me the questions, and I told her the answers, and this is what I wanted. If they couldn’t read this, they can go away and I’ll get somebody else that can read it. So that was the way it was.”

Change to my autonomy during illness progression

This theme addressed participants’ loss of control over their lives as their illness progressed. Two subthemes were developed: loss of control and adaptation to the impacts of changes caused by the illness. The awareness that the illness dominated the participants’ lives and made them aware of the finitude of their lives represented a loss of control. Impacts of the illness restricted their ability to maintain a normal life, which required the participants to develop adaptation strategies.

Loss of control

The perception of choices running out was conceptualised as a loss of control. Only Roy showed great apprehension regarding his illness progression and a loss of control as his cancer could not be removed: “So I’ve been getting some cancers cut out lately, and that’s not a pleasant feeling. . . I’ve got the cancer that’s in the body that they can’t cut out.” The acknowledgement that his illness may soon dominate his life further shows the loss of autonomy, as he anticipated a near future where his choices may be increasingly constrained: “And I don’t think it will take real long for this to take over my life.”

Adaptation to the impacts of changes

Both participants expressed that their sense of autonomy was affected by their need to manage illness-related changes; they showed different ways of adapting to the progression of their illnesses. Physical changes affected Roy’s ability to carry out daily activities and function autonomously: “It’s sort of eased off now. But now that the boys [testicles] have swollen up like they have that’s another thing which is slowing me down. Story of me life.” Roy demonstrated a reactive adaptation by not engaging in activities that would result in pain: “If I got too physical with it. . . that would affect me.” He did not substitute the affected activities, which implied an additional loss of autonomy. In contrast, Frank proactively adapted to physical and emotional changes to maintain his sense of autonomy, showing an effort to assert control over his health and wellbeing: “If I feel exhausted. I have to lie down. If I feel in pain, I have to take the right medication. If I feel lonely, which is another side effect, get on the Internet” and “A mental thing [rather] than a physical thing because there are things you cannot do anymore. . . I’ll give myself a target every day. Then do another rest.”

Self-assessing my abilities to exercise autonomy

Both participants self-assessed the impact of their illness on their ability to exercise autonomy. Two subthemes were developed: maintaining cognitive function and maintaining independence, contributing to their sense of autonomy.

Maintaining cognition functioning

Both participants referenced their cognitive function as a measure of how they could exercise autonomy despite their illness. Roy showed commitment to staying mentally alert and engaged: “Try and keep on top of the brain” and “I think the marbles that are up on the top here. I’ve got to give him [my head] a pat every now and then to say you guys, anybody home up there?” Frank demonstrated confidence in his cognitive capacity and actively monitored and managed his mental state: “And they [doctors] were gobsmacked. How I look, how I feel, how my brain ticks over when I speak. Because if there’s anything wrong, I will tell them.” Participants’ self-monitoring and management of cognitive capacity reflected an understanding that maintaining cognitive function is essential for sustaining a sense of autonomy.

Maintaining independence

Both participants considered independence as another measure of autonomy, reporting ways in which they were able to practice autonomy in their own lives. To Roy, being able to drive represented independence, but an incident prompted him to autonomously make the decision to give up driving. Roy reflected on his physical limitations that caused him to decide to stop driving, framed as a way he could maintain independent choice: “I collapse behind the steering wheel. . . I can’t go out onto the highway with this sort of situation hanging over my head. So yeah, I have to give this a miss. I haven’t been driving ever since.” For Frank, maintaining the ability to manage daily tasks was crucial: “I like the sort of independence, which is my major driving force.” Frank’s commitment to control his life was a fundamental motivator.

My coping mechanisms for loss of autonomy

The participants articulated coping mechanisms to deal with the loss of autonomy. Three subthemes were developed: a positive mindset, being generous to others, and recognising and accepting the need for support from others. A positive mindset includes aspects such as optimism, acceptance, gratitude and mindfulness. These subthemes fostered resilience, created meaningful connections and leveraged external resources to navigate and mitigate the impacts of loss of autonomy.

Positive mindset

The participants approached life in positive and productive ways, contributing to higher resilience and motivation for coping with loss of autonomy. Roy showed an optimistic outlook on life despite his circumstances and the hopeful anticipation of waking up each morning: “The light at the end of the tunnel is that I can probably go to bed at night and, with a bit of luck, wake up in the morning.” Looking for improvement and recovery was observed in Frank’s quote: “Medication came in in a big way; [it] was on 40 tablets a day just to stay alive. Reduce now 11 a day; that’s a big step.” Frank used a positive thinking metaphor suggesting that difficult times are temporary and will eventually lead to better circumstances: “You go through rough weather, and the other side is sunshine.” Additionally, recollection of pleasant memories was observed in both participants to assist them with dealing with their current situation. Roy remembered campervan trips with his wife: “All the towns and cities and all that sort of stuff. We went to.” Frank remembered attending cricket games with his friend: “We always went to the first-day test match. . . It’s fun. Oh, it was, it really was.” Humour was used by Roy when referring to using a “big stick” to assert himself in a light-hearted manner, helping to maintain a positive attitude: “Yes, even if I’ve gotta have a big stick, this one here, that’s a decision made.” Frank also used humour to cope: “I will still be here at 200.” Frank further expressed a deep appreciation for life: “Seriously love life.”

Being generous to others

It was observed that being generous to others led to a sense of purpose and social connection. This coping mechanism appeared to increase participants’ moods, self-esteem and ability to maintain their social connectivity. This social connectivity seemed to instigate autonomous behaviour and offered a sense of autonomy. Roy showed generosity and a desire to support others by giving away some of his belongings, even though this also meant acknowledging the loss of autonomy as he no longer could use these items: “Hopefully, the boys [sons] can do something with it.” Frank chose to act generously in his own way: “I run a little Facebook [group] for people who had cancer, got cancer, so they can just come in and tell these stories.” Frank also helped family members when needed: “If it’s a problem in the family, I’m in the car down there.” For him, generous acts were especially meaningful: “Sense of pleasure that you’ve helped somebody, and you can see them go forward.”

Recognising and accepting the need for support from others

Both participants acknowledged the essential role of external assistance in maintaining their wellbeing and autonomy. Roy recognised how crucial his wife’s support was: “Without her, I wouldn’t be here.” For Frank, the ability to talk with someone was critical: “And the only way you can cope with it is talking to somebody.” Participants shared that others’ support was essential for continuing independent lives and allowed them to maintain autonomy. Both participants expressed appreciation for the consistent support provided by others. Roy stated that his wife was his main support: “I’ll have me office girl here to look after me all the way through to the end.” Frank mentioned others’ support: “They treat you like a special person.” These quotes show that participants were grateful for and accepted offers of help. Support was a vital coping mechanism reinforcing autonomy by providing the necessary resources, emotional support and practical assistance to navigate challenges and maintain control over their lives.

Discussion

This qualitative research explored palliative care patients’ experiences of autonomy amidst challenges imposed by their illnesses. Participants expressed autonomy due to their illnesses that affected many aspects of their lives. This indicated a scope of autonomy in palliative care that went beyond healthcare, showing multifaceted and nuanced expressions of autonomy experienced in many daily activities. As health conditions changed, participants needed to adapt to new circumstances. The findings point towards a broader understanding of autonomy, as suggested by Houska and Loučka,⁴⁷ rather than offered by a narrower Kantian interpretation.⁴⁸

Sensitive and nuanced expression of autonomy

Due to the loss of control and independence, palliative care patients may develop an elevated sensitivity for autonomy compared to individuals without significant health concerns.⁴⁹ Both participants found their sense of control and independence taken away by the impact of their illnesses. This was expressed in their healthcare decision involvement, how their perceived autonomy changed during illness progression, how they self-assessed their level of autonomy and how they coped with autonomy loss. Multifaceted expressions of autonomy were observed when the participants wished to exercise higher levels of control in some areas and lower controls in others; our participants did not consistently wish for similar levels of control. Some choices appeared influenced by the participants’ personalities and life experiences and their stage of palliation.

This nuanced expression of autonomy is observable in the participants’ healthcare decision involvement: Roy wanted to be involved in doctors’ decisions of which skin cancers to remove, while Frank delegated the final decision to the specialist, whom he trusted to know what was best for him. The men requested different levels of detail about their health situations, contrasting their wishes to be involved in decision-making. Roy wanted just enough information to keep going; however, he wanted to be involved in decision-making. In contrast, Frank wanted to know everything, even though he had delegated the final decision to the experts. Such seemingly contradictory approaches within an individual poses a challenge to both formal and informal carers, albeit one that is still manageable. Frank found sometimes, during initial conversations, he needed to speak up for the doctor to respect his wish for involvement in communication. This consistent with Johnson et al.,⁵⁰ which showed the discrepancies between physicians’ and patients’ interpretations of patient autonomy. Possibly due to the more advanced stage in palliation, Roy’s primary concern and wish was to assert his autonomy during the nearing end-of-life phase by signing an ACD. Frank was less advanced in his palliation and expected to live for a long time. He may not have wanted to discuss the topic of end of life. This highlights that patient autonomy in healthcare may be granular, where patients may wish to be more involved or informed in some aspects compared to others. Patients may only want to be informed on an as-needed basis while involved in decision-making. Conversely, someone may want to know as much as possible but may choose not to be involved in decision-making. The participants’ experiences underscore the need for healthcare professionals to identify and respect the patients’ wished levels of truth-telling and involvement in healthcare decisions and, with this, respect their autonomy, per the principles of person-centred care.³⁶

Sense of loss and control

As the illness progresses, patients feel a loss of control and need to adapt, which resonates with the findings of Rodríguez-Prat et al.³² that changes in patients’ conditions significantly impact their sense of control and autonomy. Roy expressed a profound sense of loss as his illness advanced, a common experience among palliative care patients.⁵¹ Adaptation strategies varied among participants; Frank showed a proactive approach, and Roy used a more reactive approach to managing changes. Frank pursued a more active lifestyle, adapting and setting goals to avoid or delay further health declines. Roy did not replace physical activities impeded by the illness. Proactive adaptation may have created a stronger sense of control and autonomy than reactive adaptation, may have been an indication of an existing stronger sense of control and autonomy, or a combination of both: Further research is required to understand the reciprocal relationship between existing sense of control and autonomy and impact on later perceptions of control and autonomy. The difference between the participants’ adaptation strategies is also likely influenced by differences in personalities, life experiences and/or stages of palliation. Severe physical health impacts of advanced stages of illness may limit the capacity to adapt. A lack of proactive adaptation leads to further loss of independence and autonomy, reducing the motivation for further adaptation, causing negative self-reinforcing cycles, and worsening health outcomes. Conversely, proactive adaptation may lead to positive reinforcement.⁵² These possibilities suggest opportunities for psychological intervention to ensure patients can reconcile their psychological needs of autonomy with their physical condition.

The participants displayed self-awareness for cognitive functioning and independence, which are enablers of exercising autonomy. Both participants actively monitored their cognitive health through mental alertness. This aligns with existing literature that emphasises the role of cognitive function in maintaining autonomy in palliative care.²¹ The participants’ commitment to managing cognitive health illustrated a critical aspect of autonomy: self-governance.¹⁸ Participants viewed their independence, such as their ability to perform activities without relying on others, as measures of autonomy. This echoed previous research indicating that independence in daily activities is closely tied to perceptions of autonomy in palliative care.⁴⁷ Roy’s decision to stop driving, despite representing a loss of independence,⁵³ was made autonomously, showing control over his life and his opportunity to make choices consistent with his values. To Frank, maintaining independence was his main goal; even with knowledge of his decreased abilities, he found alternative activities to continue feeling independent, preserving his sense of autonomy. Roy and Frank’s approaches underscore the complex interplay between autonomy and independence.

Adaptive coping in the face of autonomy loss

Loss of autonomy is almost inevitably associated with palliation, which can affect patients’ mental health. Coping with loss of autonomy is critical for maintaining mental wellbeing.⁵⁴ The participants coped with a sense of autonomy loss via a positive mindset, being generous to others, and recognising and accepting the need for others’ support. Both participants focused on the future; while Roy desired to live to the next day, Frank desired to live a long time, which may be influenced by their stage of palliation. Additionally, Roy used humour, especially later in the interview, which may be because the hard topics had already been explored, and he felt more comfortable with the interviewer.

These findings support a positive outlook as a vital coping strategy.³⁵ Participants gained a sense of purpose and social connection by being generous to others, which represents a further coping strategy. Lastly, participants recognised the need for and accepted support from caregivers and healthcare professionals as essential for limiting the loss of independence under the circumstances. This highlighted a tension between accepting the loss of independence and supporting the maintenance of limited independence, which is exercising autonomy. This aligns with the person-centred care approach that prioritises support systems to enhance patient autonomy.⁴

Navigating the complexity of the themes discussed here and the implications for autonomy in palliative care may require healthcare professionals to consider information provision and shared decision-making. Greater emphasis could be placed for such concepts to be thought of as continuous, iterative processes that vary and change. Assuming a patient retains the same preferences throughout their care may lead to tension with other principles of bioethics, such as beneficence and non-maleficence.²³ Instead, engaging flexibly with patient autonomy prompts healthcare professionals to consider the logic of care, instead of the logic of choice.¹⁵ In this way, autonomy becomes much more than the decisions a patient makes or the amount of information they accept or refuse, and instead becomes part of their relationship with themselves, and how they are supported to honour that relationship.

Limitations and future directions

A limitation of the study is the inherent selection bias whereby participants who volunteered might have had more positive experiences in palliative care, as seen in their overall satisfaction with their care. Similarly, the perspectives of patients who perceived themselves as too unwell to participate are also not included. Moreover, the recruitment of two participants from the same healthcare service may have resulted in perspectives or opinions unique to that context. Finally, the presence of family members during the interview may have influenced the participants’ willingness to share, but as noted previously, discomfort with family presence was not noted and was at the participant’s discretion.

Healthcare professionals must continue developing awareness of palliative care patients’ highly diverse, situational and individualised perceptions of autonomy that extend outside the healthcare context. A potential approach to supporting palliative healthcare professionals may be to develop guidance and skills to navigate and negotiate acceptable levels of autonomy with patients. This aligns with the broader literature on patient autonomy in palliative care, which emphasises the importance of person-centred care, effective communication and support systems.^14,20 Conducting such work with larger samples and from diverse contexts will provide richer understanding of the breadth and consistency of such experiences.

Conclusion

In conclusion, this study provides valuable insights into the intricate ways palliative care patients perceive and maintain their autonomy amidst illness progression, through careful documentation of participant experiences. The themes of participants’ involvement in healthcare decisions, changes to their perceived autonomy during illness progression, self-assessment of autonomy and coping mechanisms revealed the multifaceted nature of autonomy in this context. Participants demonstrated varying degrees of proactive and reactive strategies to manage their sense of control. The findings emphasised the need for healthcare professionals to adopt flexible, individualised, person-centred care approaches that respect patients’ preferences and involve them in decision-making processes. Additionally, recognising and supporting patients’ coping mechanisms, such as maintaining a positive mindset and accepting help from others, is crucial. Future efforts should continue to explore the diverse and dynamic nature of patient autonomy in palliative care, considering the complex interplay of individual, social and cultural factors. By deepening the understanding of autonomy in palliative care, patients can be better supported in maintaining their dignity, control and living quality during their final stages of life.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524251409848 – Supplemental material for Patients’ perceptions of autonomy in palliative care: Two patient interview exemplars

Supplemental material, sj-docx-1-pcr-10.1177_26323524251409848 for Patients’ perceptions of autonomy in palliative care: Two patient interview exemplars by Kristen Tulloch, Julia Acordi Steffen and John P. Rosenberg in Palliative Care and Social Practice

Footnotes

Acknowledgements

The authors would like to thank the participants for their invaluable contribution to the study, along with the organisation and its team, which provided the participants’ care and facilitated their involvement in this research. Author J.S.: To my beloved sister Lika, who, after discovering having cancer, turned from my little sister to my teacher, showing me what matters: to be present and love others. You died, and there is much pain, but I am so grateful you shared your whole life with me.

ORCID iDs

Kristen Tulloch

Julia Acordi Steffen

John P. Rosenberg

Ethical considerations

This study was approved by the Human Research Ethics Committee of the University of the Sunshine Coast (S231873).

Consent to participate

The study design and conduct included additional precautions given participants’ vulnerability. Participants were invited by their palliative care Nurse Practitioner to participate in the research. The palliative care Nurse Practitioners emailed the researcher the prospective participant’s name and contact details after the prospective participants had granted verbal or written consent for such information to be shared. To avoid coercion risks and keep the project separate from care provision, consent was negotiated between the researcher and participant without their Nurse Practitioner present. Both participants provided written consent, including consent to audio recording. Nurse Practitioners knew the individuals had chosen to participate and with participants’ consent, provided details of medical conditions to minimise the burden on participants. This information was provided via phone call or Zoom to avoid written transfer of sensitive information. Nurse Practitioners were not present during interviews and had no access to interview recordings or transcripts. The research protocol was designed such that participant fatigue was managed by completing interviews in shorter sessions if required. Further, we planned that if participants were deemed eligible during the consenting process but demonstrated confusion during the interview, the session was rescheduled. Participants could withdraw from the project at any time before the completion of the final analysis.

Consent for publication

Both participants provided consent for their de-identified data to be analysed and published in research journals.

Author contributions

Kristen Tulloch: Conceptualisation; Formal analysis; Methodology; Project administration; Resources; Supervision; Validation; Writing – original draft; Writing – review & editing.

Julia Acordi Steffen: Conceptualisation; Data curation; Formal analysis; Investigation; Methodology; Project administration; Validation; Writing – original draft; Writing – review & editing.

John P. Rosenberg: Conceptualisation; Formal analysis; Methodology; Resources; Supervision; Validation; Writing – original draft; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: In-kind support (access to data analysis software, etc.) was provided by the employing/enrolling university.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Data from this project are not available as this level of consent was not provided by participants. The interview topic guide is provided as a Supplemental Material.

Supplemental material

Supplemental material for this article is available online.

References

Berger

Boss

Beach

MC.

Communication behaviors and patient autonomy in hospital care: a qualitative study. Patient Educ Couns 2017; 100: 1473–1481.

Tahmasebi

Ethics and palliative care: a case of patient’s autonomy. J Med Ethics Hist Med 2022; 15: 16.

Bernard

Poncin

Althaus

, et al. Posttraumatic growth in palliative care patients and its associations with psychological distress and quality of life. Palliat Support Care 2022; 20: 846–853.

Palliative Care Australia. What is palliative care?, https://palliativecare.org.au/resource/what-is-palliative-care/ (2015, accessed 19 July 2024).

Nyatanga

Palliative care as a human right. Int J Palliat Nurs 2023; 29: 203–203.

Australian Institute of Health and Welfare. Palliative care services in Australia, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia/contents/about (2023, accessed 19 July 2024).

Hardy

Flemming

Palliative and end of life nursing care. Learning Matters, a SAGE Publishing Company, 2023.

World Health Organization. Palliative care, https://www.who.int/news-room/fact-sheets/detail/palliative-care (2020, accessed 19 July 2024).

Australian Commission on Safety and Quality in Health Care. Person-centred care. [Internet], https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care (2023, accessed 19 July 2024).

10.

Roeland

Cain

Onderdonk

, et al. When open-ended questions don’t work: the role of palliative paternalism in difficult medical decisions. J Palliat Med 2014; 17: 415–420.

11.

Galekop

MMJ

van Dijk

van Exel

, et al. Views of professionals and volunteers in palliative care on patient-centred care: a Q-methodology study in the Netherlands. BMC Palliat Care 2019; 18: 97–97.

12.

Baik

Cho

Masterson Creber

RM.

Examining interventions designed to support shared decision making and subsequent patient outcomes in palliative care: a systematic review of the literature. Am J Hosp Palliat Med 2019; 36: 76–88.

13.

Giusti

Nkhoma

Petrus

, et al. The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review. BMJ Glob Health 2020; 5: e003330.

14.

Brummel-Smith

Butler

Frieder

, et al. Person-centered care: a definition and essential elements. J Am Geriatr Soc 2016; 64: 15–18.

15.

Mol

The logic of care: health and the problem of patient choice. Routledge, 2008.

16.

Sobolewska

Byrne

A-L

Harvey

, et al. Person-centred rhetoric in chronic care: a review of health policies. J Health Organ Manage 2020; 34: 123–143.

17.

Fernández-Ballesteros

Sánchez-Izquierdo

Olmos

,et al. Paternalism vs. Autonomy: Are they alternative types of formal care? Front Psychol 2019; 10: 1460.

18.

Campbell

Kant, autonomy and bioethics. Ethics Med Public Health 2017; 3: 381–392.

19.

Thompson

Gabriel

Yoward

, et al. The advanced practitioners’ perspective. Exploring the decision-making process between musculoskeletal advanced practitioners and their patients: an interpretive phenomenological study. Musculoskeletal Care 2022; 20: 128–136.

20.

Dawda

Janamian

Wells

Creating person-centred health care value together. Med J Aust 2022; 216: S3–S4.

21.

Elsner

Rampton

“Accompanied only by my thoughts”: a Kantian perspective on autonomy at the end of life. J Med Philos 2022; 47: 688–700.

22.

Saad

TC.

The history of autonomy in medicine from antiquity to principlism. Med Health Care Philos 2018; 21: 125–137.

23.

Beauchamp

Childress

JF.

Principles of biomedical ethics. 8th ed. Oxford University Press, 2019.

24.

Rosenberg

Noonan

Patient and public involvement in palliative care. In: Kitchen

(ed.) Handbook of palliative care. 4th ed. John Wiley & Sons, 2023, pp. 16–24.

25.

Becker

Jors

Block

Discovering the truth beyond the truth. J Pain Symptom Manage 2015; 49: 646–649.

26.

Nakazawa

Yamamoto

Ozeki-Hayashi

, et al. Is it worth knowing that you might die tomorrow? Revisiting the ethics of prognosis disclosure. Clin Pract 2022; 12: 803–808.

27.

Suri

McKneally

Devon

Tragic knowledge: truth telling and the maintenance of hope in surgery. World J Surg 2014; 38: 1626–1630.

28.

Haltaufderheide

Nadolny

Gysels

, et al. Outcomes of clinical ethics support near the end of life: a systematic review. Nurs Ethics 2020; 27: 838–854.

29.

Bergqvist

Strang

Breast cancer patients’ preferences for truth versus hope are dynamic and change during late lines of palliative chemotherapy. J Pain Symptom Manage 2019; 57: 746–752.

30.

Testoni

Wieser

Kapelis

, et al. Lack of truth-telling in palliative care and its effects among nurses and nursing students. Behav Sci 2020; 10: 88.

31.

Gula

Walter

Morrison

, et al. Exploring ethical dimensions in neuropalliative care. Semin Neurol 2024; 44: 534–542.

32.

Rodríguez-Prat

Monforte-Royo

Porta-Sales

, et al. Patient perspectives of dignity, autonomy and control at the end of life: systematic review and meta-ethnography. PLoS One 2016; 11: e0151435.

33.

Brown

Thaker

Sun

, et al. Nothing left to chance? The impact of locus of control on physical and mental quality of life in terminal cancer patients. Support Care Cancer 2017; 25: 1985–1991.

34.

Galvin

Randel

Collins

, et al. Changing the focus of locus (of control): a targeted review of the locus of control literature and agenda for future research. J Organ Behav 2018; 39: 820–833.

35.

Rodríguez-Prat

Pergolizzi

Crespo

, et al. Control in patients with advanced cancer: an interpretative phenomenological study. BMC Palliat Care 2022; 21: 97–97.

36.

Kuosmanen

Hupli

Ahtiluoto

, et al. Patient participation in shared decision-making in palliative care: an integrative review. J Clin Nurs 2021; 30: 3415–3428.

37.

Martins Pereira

Fradique

Hernández-Marrero

. End-of-life decision making in palliative care and recommendations of the Council of Europe: qualitative secondary analysis of interviews and observation field notes. J Palliat Med 2018; 21: 604–615.

38.

Gerber

Lemmon

Williams

, et al. “There for me”: a qualitative study of family communication and decision-making in end-of-life care for older people. Prog Palliat Care 2020; 28: 354–361.

39.

Palliative Care Outcomes Collaboration. Clinical Manual, https://documents.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129133.pdf (2021, accessed 19 July 2024).

40.

Smith

Fieldsend

Interpretative phenomenological analysis. American Psychological Association, 2021.

41.

Smith

Osborn

Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain. Br J Pain 2015; 9: 41–42.

42.

Smith

Nizza

Interpretative phenomenological analysis. American Psychological Association, 2022.

43.

Varpio

MacLeod

Philosophy of science series: harnessing the multidisciplinary edge effect by exploring paradigms, ontologies, epistemologies, axiologies, and methodologies. Acad Med 2020; 95: 686–689.

44.

Khatri

KK.

Research paradigm: a philosophy of educational research. Int J Engl Lit Soc Sci 2020; 5: 1435–1440.

45.

Cohen

Kassan

Wada

, et al. The personal and the political: how a feminist standpoint theory epistemology guided an interpretative phenomenological analysis. Qual Res Psychol 2022; 19: 917–948.

46.

van Manen

Higgins

van der Riet

. A conversation with Max van Manen on phenomenology in its original sense. Nurs Health Sci 2016; 18: 4–7.

47.

Houska

Loučka

Patients’ autonomy at the end of life: a critical review. J Pain Symptom Manage 2019; 57: 835–845.

48.

Frank

Person-centered care, autonomy, and the definition of health. Am J Bioeth 2013; 13: 59–61.

49.

McCaffrey

Bradley

Ratcliffe

, et al. What aspects of quality of life are important from palliative care patients’ perspectives? A systematic review of qualitative research. J Pain Symptom Manage 2016; 52: 318–328.e315.

50.

Johnson

Butow

Kerridge

, et al. Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians’ perspectives. Support Care Cancer 2018; 26: 565–574.

51.

Monforte-Royo

Crespo

Rodríguez-Prat

, et al. The role of perceived dignity and control in the wish to hasten death among advanced cancer patients: a mediation model. Psychooncology 2018; 27: 2840–2846.

52.

Lau

Khoo

AMG

AHY

, et al. Psychological resilience among palliative patients with advanced cancer: a systematic review of definitions and associated factors. Psychooncology 2021; 30: 1029–1040.

53.

Lee

Scott

TL.

Exploring psychosocial dynamics underpinning driver identity in an older adult sample. Geriatrics 2022; 7: 122.

54.

Galiana

Tomás

Fernández

, et al. Predicting well-being among the elderly: The role of coping strategies. Front Psychol 2020; 11: 616–616.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB