Self-management support? Listening to people with complex co-morbidities

Endless loss and unresolved grief

The findings revealed participants living complex, diverse lives marked by loss, poverty and daily challenges indirectly related to their declining health. Amidst their frustrating, escalating descriptions of distress, an overall sense of loss across all aspects of their life came through strongly, as they felt reduced to survival mode by their cumulative losses. Poor health was just one of many problems they faced and it was rarely high amongst their priorities.

The participants used words such as ‘unremitting’, ‘inescapable’ and ‘cascading’ to describe their decline in physical health: Tane described his life journey:

It wasn’t so bad at the beginning but then it got worse and worse … and then I got COPD, then I had a PE [pulmonary embolus]. I started off with one medication, then I was on two, then three, then the heart …

Although the participants experienced many physical losses with their multiple LTCs, losses from other areas of their lives caused them more distress. All participants experienced periods of low mood and Lou said, ‘on lots of days, I just have to will myself to get out of bed’. Tane’s despair was felt more keenly and he said, ‘half the time, I don’t live really - I just exist’. He depicted his mood as going ‘down and down, and it’s grey, and it’s crappy, and then it just turns to custard’. Most of the participants also spoke of an ongoing grief, something Diane labelled ‘a lifetime of letting go’. Lou agreed, explaining how ‘the grief all just flows into each other. I try not to dwell or look back. I’ve lost everything really’.

The seemingly endless succession of losses left participants unable to deal with the grief of one loss before another arose, something several likened to being on a treadmill. Aroha explained:

it never ends and you never get a chance to catch up. I mean you just get used to one thing and then there’s something else. You never come to terms with it. You just never get a chance to.

Weariness

The participants are left weary and exhausted yet expected to navigate a health system where they are motivated and able to participate in collaborative goal setting. Participants felt their loss of autonomy and freedom acutely, leaving them with feelings of resentment and frustration, several depicting themselves as a prisoner. Lou said she ‘get(s) so frustrated, you know, [but] I just haven’t got the energy to fight it’.

The participants’ sense of powerlessness amidst their LTCs was tangible. The losses across all aspects of their lives resulted in participants feeling drained of any sense of purpose, vitality or motivation. Most were left with negligible hope for the future and an overarching feeling of hopelessness and inevitability. Aroha explained how, ‘it’s nothing physical. It’s just me. I can’t be bothered. It’s like I’ve lost that thing - my mojo is it? - to do anything’. Feeling ‘unable to be bothered’, again sits uncomfortably alongside the notion of goal setting and forward planning as required by the self-management approach.

Enforced passivity

There were multiple examples in the data of participants feeling forced into passivity by a process and system that ostensibly empowered. Poor communication, interminable waiting and complicated, often changing rules all contributed to this sense of enforced passivity. The most frequent example was the wait for a hospital outpatient appointment and participants were often waiting for several appointments with different specialists. Aroha characterised her relationship with the hospital as ‘a waiting game … you’re waiting for every different department to hurry up and sort themselves out’.

Ill equipped for goal setting

Goal setting is an integral part of the self-management approach in primary care. However, the complex health and social needs and limited energy for agency of the participants meant genuine goal setting was sporadic at best and an irrelevance to most. The progressive nature of their LTCs made goal setting a commitment to something unachievable which led to an inexorable sense of failure for both patients and clinicians. Eva described it as ‘just something else I’m no good at’. She said:

well, we did [goal setting] at the beginning – but I’m not much good at that sort of thing. Yes, there are goals I’d really like, like losing weight but it doesn’t work. So, the goals are what I’d like to be able to do, but know I really can’t. And I feel a bit of a flop when I haven’t met them, so we gave up. They are a pain for the nurse anyway – they are supposed to do them but they know I won’t do my part so they are a waste of everyone’s time.

For people with significant, multiple LTCs the findings suggest the goal-directed self-management approach is not effective. Clinicians’ and patients’ shared frustration shows the mutual entrapment they both experience within an approach to care that fails to meet the needs of this very specific cohort of patients.

Valued care

Amidst the patients’ descriptions of struggling to manage within the self-management approach, they also offered many examples of excellent care that both the patients and their clinicians valued. However, it was deeply ironic to note that the most highly valued aspects of primary health care, those that patients said they appreciated, needed and wanted and those clinicians’ clinical judgement suggested were most efficacious, generally sat outside the confines of the funded aspects of the self-management approach.

The patients mentioned repeatedly their sense of being cared for that occurred in the clinical encounter. Lou said, ‘sometimes when you’re ill, what you need is a hug, and she [GP] knows that’. Despite the clinicians experiencing constant time pressure, a number of patients expressed their appreciation that they never felt hurried. Diane volunteered, ‘you always appear to be the only patient he’s going to have that day’. The clinicians filled the patients’ expressed needs for a navigator, advocate, translator, passionate ally or an intermediary between the patient and hospital system rather than the collaborative partner envisaged in the self-management approach.

Some of the clinicians defined a patient as an over-attender, someone they described as coming to the practice for seemingly trivial matters despite money being scarce, or a free visit pending. The patients explained, when questioned, that what they wanted was the opportunity to talk with someone who cared and would listen and who knew them and their family; their long-term relationship with the clinicians met those needs. Eva explained that her PN: ‘is always an ear, especially when I have no one else to talk to… and [GP] sort of pats me on the back and she says, “take care” and so yeah, she understands’.

Aroha said of her GP: ‘oh, I like her. She’s massive. She’s a lovely doctor. You can talk to her. She’s easy to approach and very caring’.

Patients considered they were receiving what they needed from their visits and did not consider they were over attending. For them the purpose of the visits was to feel cared about or listened to, and sadly for several, the clinician was the only person they had to fill this role. Diane summarised this, saying ‘somewhere you need a space in the system to tell your story’.

The clinicians offered insights into patients’ lives and seemed to have a good grasp of how it was for the patients living with multiple morbidities. Diane’s GP accurately thought:

daily tasks I imagine are quite a struggle for her. I suspect she probably has to work out exactly what she’s going to do each day, and have a time-scale around it, whereas we would just get on and do it, so I imagine that things take a lot longer and she has to pace herself.

Participants value both the long-term relationships between clinicians and patients that underpin primary care and the clinicians’ familiarity with both some of their social context and their family members. Frequently, their priority was a concern about a family member and they appreciated the opportunity to express their concerns with someone they knew and trusted.

Data presented here showed that the goal setting and health promotion activities so very relevant to people with single diseases or in the early stages of LTCs do not meet the needs of people with advanced complex LTCs. Similarly, clinicians expressed frustration that funding specifically constrains their responses to such patients. Patients are clear that they lack the energy and focus for self-management and that they need to be feel cared for and supported in what is a daily struggle.

Summary of main findings

The findings presented in this paper reveal a cohort of tired, distracted patients struggling to manage their lives in the face of multiple conflicting challenges. At the same time, many of their medical and nursing clinicians recognise their patients’ distress but seem obstructed from responding due to predominant approaches to care and restrictive funding models.

Participants experienced multiple losses across all facets of their lives, leaving them with insufficient energy for the level of personal agency required to deal with the self-management approach. For them, personal agency was neither a choice nor readily achieved and their situations bore little resemblance to the Chronic Care Model’s thriving ‘informed, activated patient’.^3,9 Rather, these participants’ lives were more akin to ‘getting by’ or survival.

There were also numerous ways in which encounters with the self-management approach and the health system further disempowered participants. The exhausted patients are expected to work within an approach not designed for their severity of advanced LTCs but focused on improvement. The goal-setting process results in an almost inevitable sense of failure which blocks people from accepting their LTCs and the unavoidable limitations imposed by their health status. The resulting sense of failure can increase feelings of guilt and lead to further disengagement with health services. This lack of focus upon acceptance meant, for example, that Tane resisted using his oxygen as prescribed to avoid becoming ‘addicted’ and he talked of still wishing for ‘a magic pill so I can do the things I used to do’. Others planned for when they were able to stop their medications, intended to achieve goals once they were ‘better’, or resisted using a walking frame to avoid ‘being defeated’.

Clinicians also described their sense of working within an unhelpful system where they have to manoeuvre and negotiate in order to be able to compassionately and pragmatically support patients as well as they can. The dominance of a self-management approach is both increasing participants’ sense of personal failure and potentially blocking the development of alternative ways of delivering health care for this cohort.

Strengths and limitations of the study

The study gained strength from the insightful qualitative data gathered from the long conversations and trusting relationships that were developed between the researcher and the participants, who came from a cross-section of the population representative of people who experience multiple LTCs. The participation of the participants’ own GP and PN also added richness to the data. It is acknowledged that the study whilst rich in depth is numerically small. A further limitation to the study was its specificity to the New Zealand primary care and funding environment.

Suggestions for alternative ways of thinking about care

The findings surfaced examples of excellent care that both the patients and their clinicians valued but these were located outside care associated with the self-management approach. These valued aspects of care could be seen as signposts for the exploration of an alternative philosophy of care designed to optimise quality of life for the increasing number of patients who have several significant LTCs. We now argue that there is a more appropriate platform for care for people with multiple LTCs than the present self-management approach.

The findings show the patients valued caring for and being cared about within an established long-term relationship such as that provided within a general practice setting. The value of compassion to both patients and clinicians is a strong thread in the findings and is the connection they seek, comprising thoughtfulness and kindness as well as clinical care. There are many examples in the findings of overt compassionate intent that supports the participants’ personal agency rather than undermining it.

Compassion sets the scene for a powerful environment for care in an encounter where the clinician appears fully engaged and hears what the patient is saying. The importance in the findings of interpersonal relationships and benevolence echoes the ideas that underpin the ethics of care.^19,20 Care focussed on the individualised needs of the patient recognises that, despite seemingly similar circumstances, a ‘one-size-fits-all’ is unlikely to meet everyone’s needs.^20,21 A compassionate, individualised approach is more likely to meet the needs of the person with several LTCs than the self-management approach and suggests a way to potentially optimise a person’s quality of life.

As well as being informed by an ethic of care, the underlying philosophy of palliative care has a strong synergy with what is valued by the participants, suggesting a helpful way of considering new ways to address these patients’ unmet needs. Palliative care’s underlying principles are understanding, compassion and kindness ²² and so echo the valued aspects of care mentioned above. Care is focussed on the provision of comfort and the ‘relief and prevention of suffering and improvement of quality of life’^22(p223) rather than cure remaining the goal.

However, the way palliative care has developed over time has meant that it now meets the needs of a relatively narrow range of people. Palliative care was originally synonymous with the hospice movement ²³ which, in its early years focussed on those areas of greatest need, which were for people with cancer, especially their pain control. Although this association between the hospice movement and cancer has decreased, still 79% of people receiving hospice care have cancer, which contrasts with 33% of all New Zealand deaths. ²⁴ Despite LTCs inevitably being both progressive and life limiting, there is a much less significant uptake of palliative care by people with a non-cancer LTC. ²⁵ Both the literature and the eligibility criteria of the local palliative primary care programme award primacy to a patient’s physical symptoms ²⁶ despite the findings of this study revealing the majority of participants’ anguish sitting outside the physical domain. Cancer’s more predictable path of deterioration compared to other LTCs has also shaped palliative care’s time frame, resulting in palliative care’s association with the last weeks or months of life or ‘dying’. ²⁵ For example, local primary care documentation contains an eligibility criteria that ‘the patient must have a … likely prognosis of 6 months or less’. The study participants have already had many years, often decades, of living with their multiple LTCs and their need for support and care will continue for many more, certainly not just for the last few weeks or months alone.

The palliative care discourse is steadily moving to a wider focus upon an individual’s overall quality of life.^27–29 An ‘upstream’ or ‘anticipatory’ palliative care approach is becoming increasingly common where care is offered earlier in the disease trajectory, ³⁰ and results have consistently reported improved quality of life, including a large study in Scotland delivered from within primary care. ³¹

Although they were not well served by the self-management approach and their LTCs were life limiting, the participants were reluctant to think in terms of palliative care as they understood it. Their clinicians also, despite frequently mentioning how fragile the participants’ health was, did not consider the option of palliative care. Conversations with several participants led us to become intensely aware of their genuine need for the support, compassion and care presently associated with palliative care. The solution was not entirely straightforward, as these individuals may have not have been ready to accept such a focus. Tane, for instance, felt ‘I have to believe I can get better’, despite discovering during a hospital admission he was ‘not for resuscitation’. However, there were opportunities that his care, if more palliative in approach, could have met his needs more directly.

For this group of people, with their ongoing encounters with grief and loss as their LTCs progress, true palliation could be seen as an entirely appropriate and compassionate way of offering care. However, this group of patients was not ready to be considered for palliative care within the current understanding of palliation. Their experience of loss was more ambiguous and less overtly recognised than is typically understood in palliative care. The findings from neither patients nor clinicians contained any direct articulation of palliation. In the absence of a palliative approach, people with multiple LTCs miss out on the much-needed psychological support and advance care planning that is typically offered to, and accepted by, people who are terminally ill.

The change of focus suggested would mean that an individual’s personal priorities, subjective experiences, values and circumstances would shape how their individualised care is offered. The change creates a space for personal agency and hope to be thought about differently. People living with significant, multiple LTCs need these to be framed in a way that does not further undermine or disempower them or urge them towards unrealistic goals, retrieved from a template, that only increase their existing sense of failure. Instead, the reframing of personal agency in this way would go some way towards restoring individuals’ sense of control – something participants presently experience as being weakened by the self-management approach.

Although the self-management approach may be entirely appropriate for people with a single, early stage LTC, there is little congruence between the self-management approach’s idealised expert patient and this study’s exhausted participants. In order to offer the care that the participants need, self-management needs to be conceptualised differently, a process that needs to begin with consideration of how to optimise an individual’s quality of life from their perspective and relative to the stage of their disease progression.

The participants, and others like them, have many years and opportunities ahead during which they could be supported towards an optimal quality of life with individualised, realistic and meaningful goals, despite the inevitable progression of their LTCs. Individuals’ definitions of what a better life would look like are likely to vary as much as their unique circumstances. The participants aspired to simply have more ‘good days’, an aspiration echoed by Mol^32(p97) who advocates care which makes ‘life more liveable’. These personal priorities would be awarded primacy within care informed by a palliative approach, in contrast to the present curative focus. The deceptively simple goal of care for those with multiple LTCs organised in this way would be to make life better than it otherwise would have been.