​Approachability

Stakeholders’ accounts raised few of the components of approachability of health services (table 1). One issue raised was the need for patients with COPD to be given the same information on available treatments by all healthcare professionals providing care:

​I suppose the problem I have is consistency across the whole health system, in terms of the advice we're giving (…) I think my biggest problem with everything would be consistency from your GP, to your hospital, to your physio, to your pulmonary rehab, to your consultant. (…) We all seem to have our different perspective on it, and I think that sometimes is not helpful for the patients, in terms of the fact that we don't all give the same information. (Stakeholder 8)

There was also a view that patients with COPD received little information about their condition and how to manage it, particularly in comparison to other chronic conditions such as cardiac conditions and diabetes:

​There seems to be … People are sent home (from hospital), they're not given a lot of education. If you're a cardiac patient, you get books. Cardiac and diabetic get education, education. People with COPD don't seem to hear of it. (Stakeholder 1)

​Acceptability of health services

An important issue in the NZ context is the cultural acceptability of health services, both for Māori and Pasifika peoples. We interviewed two Māori health providers and the key finding was that it was crucial that relationship-building needs to occur with the community and not just with individual patients seen with COPD:

​If you're talking about services, need to build trust and respond to people and fulfil promises and build those relationships before you can kind of go on and do the nitty-gritty detailed stuff about medication and treatment. (Stakeholder 12)

This kind of relationship-building with communities and leaders within the Māori health service provision was also integral to adapting services so that they are responsive to the needs of Māori patients:

​My personal drive would be for services to come on to the marae (traditional meeting place) or to be driven by Māori kaupapa (approach and way of doing things). (Stakeholder 2)

Māori kaupapa involves centring Te Ao Māori (Māori world views, beliefs and values) within approaches to health service delivery. Thus, creating services centred on Māori perspectives would contribute to goals of patient-centred care for Māori. To do this well, requires not only adequate resourcing but health professionals who demonstrate cultural competence in relation to Māori patients and communities.

​Affordability of healthcare

Stakeholders viewed the costs of managing COPD as difficult for patients to manage. While medication subsidies exist for different patient groups in NZ, the combination of high medication use and the need for frequent doctor visits, especially during a winter period that might include multiple COPD exacerbations was seen as cost prohibitive for many. This financial barrier had two components. First, the cost of a prescription for both patients’ regular COPD medications and also for acute prescriptions when they had an exacerbation of their COPD requiring steroids and/or antibiotics:

​I would always get him a PHO voucher (free prescription voucher) so that I knew that he would leave the ward and pick up his medications because one of the biggest things with him … (was) asking for money to pick up scripts because he … you know, it's a Friday night, he's being discharged from hospital and he needs to pick up a script and he hasn’t got any money. (Stakeholder 12)

Second, the copayment requirement to see a GP meant that patients either put off consulting with their GP when unwell, or chose to attend the emergency department (ED) instead as ED care is free at the point of delivery:

​(…) it's financially difficult for them (patients) to access services. If they've had four exacerbations in six months, and they're paying to go to the doctor, it is expensive. A lot of our people struggle. So that's a real thing that people will maybe put it off or not go. (Stakeholder 2)

​We (GPs) may see the ones, the more severe ones, whereas we don't know what the ED is actually dealing with. Because they are the front line. They're the front line, so I'm not sure they are actually dealing with, but I'm pretty sure that a lot of them are actually going to the ED to seek treatment rather than going to their GPs because of cost and so on. (Stakeholder 9)

Several stakeholders also identified financial barriers as potentially increasing the risk of patients having a COPD exacerbation, by reducing the ability of patients to afford good quality housing and associated heating costs:

​The ones we see more often … there's this balance between it just being a disease process, but often it correlates with a lower socio-economic position. Housing is a big issue, the cost of energy is a big issue for those poorer people. We might see them because they're not keeping their houses warm and dry. Keeping houses warm and dry are pretty hard to do in Dunedin, and if you're poor the housing stock is crap. (Stakeholder 5)

A further issue was that COPD patients living rurally faced affordability barriers to care that included the need to arrange transport and the direct (financial: fuel and parking costs) and indirect (time) costs of attending urban clinics when transport was available.

​Appropriateness of healthcare

Stakeholders’ accounts repeatedly turned to the issue of ‘appropriate’ healthcare for patients with COPD. These accounts were framed in two ways. First, the need for specific interventions—PR and advance care planning—to be delivered both in the community and in specialist clinics. Second, the need for there to be a shared model of care across primary and secondary care. Both of these approaches were seen as facilitating a health service that better met the needs of patients with COPD.

Current recommendations for the delivery of PR are based on evidence-based guidelines around a formal programme including educational and exercise components.28 For community or home PR provision, stakeholders held a variety of views of what was possible. Stakeholders suggested that these educational and exercise components may be separated and exercise programmes (possibly at home) for those living in urban settings but who struggle to attend or those living rurally provided a more patient-centred and efficient approach:

If we don't get those exercise programmes right, we're probably missing one of the most important interventions we can supply (…) (Stakeholder 11)

There were issues raised about PR provision in the home versus community settings. Stakeholders raised the benefits of peer support and the various educational components that were provided through hospital and community-based PR:

​One of the main benefits (of hospital/community pulmonary rehabilitation) is actually going from being quite isolated to having quite a lot of contact with people that are in the same boat as yourself. (Stakeholder 1)

Providing PR in the community came with its own issues. Whether urban or rural, community-based programmes required resourcing and staffing. For those living rurally, the added issues of coordinating a workable and sustainable programme for small numbers of people living in dispersed locations was evident:

​We were going to run one (PR programme) at the moment, but when I went through my referral list, we just didn't have enough (attendees). (Stakeholder 8)

ACP (the process of planning for future healthcare and end-of-life care)29 was seen as an important aspect of care for people with COPD but participants had differing views as to who was best placed to deliver it. For example, physicians in both primary and secondary care suggested that ACP was better done in primary care, given the long-term relationship patients had with their GP, while also noting the limitations of time that are present in the primary setting:

​I think primarily it should be with GP because that's their long term healthcare provider, but I think other health professionals who encounter people have certainly the responsibility for raising it with the patient saying ‘Have you thought about this?’ (Stakeholder 11)

​Some people say it's the GP, but if you consider a GP visit being five min a visit, then there's not much of advance care planning that you can put in in that discussion. (Stakeholder 9)

The role of respiratory nurse specialists in supporting ACP in primary care was noted, as was the specific training Dunedin respiratory nurse specialists had in this area. Several participants proposed that a shared model of care, requiring good communication between primary and secondary care, was necessary so that different healthcare team members can support and reinforce each other’s efforts:

​I think it would be reasonable if the respiratory nurse specialist can do that, then they talk to GP and say ‘I saw so and so, last time I saw her we talked about this, are you happy for me to proceed to go through the advance care planning?’ Most GP's presumably would say ‘yes, that's okay’ or some would say ‘actually, I really want to do that myself because the things that other people don't know’. (Stakeholder 11)

They also highlighted the fact that ACP was not a straightforward conversation between a health practitioner and a patient, rather it was a conversation that required both time and an ongoing relationship between practitioner and patient if it was going to lead to a successful outcome:

​I see it as a … I think you've got to be pretty clever about how you do it. It's not a tick box, ‘I need to do this, this, and this’. You dance with someone when you meet someone, they give you a bit that opens a door that might for you say, ‘This person wants to know more’. Or you see them struggling and you need to open the door. Then you see how they dance back to that door, then the dance proceeds from there. Sometimes you make mistakes, but someone has got to do it … Sometimes we get phone calls, ‘Can you see this person to do advance care planning?’ I don't know them. (Stakeholder 3)

Stakeholders also talked about the need for better shared care for people with COPD, both in terms of ongoing chronic disease management and during an infective exacerbation. It was felt that COPD should primarily be managed in primary care, with input as appropriate from both respiratory nurse and medicine specialists:

​COPD is a primary care illness and should be diagnosed and managed in primary care. The patient's medical home should be the general practitioner. (…) The GP might want some assistance in that treatment of COPD and that's where a respiratory physician fits in, but that patient should come back to the general practitioner and be managed from there and not from a hospital clinic. (Stakeholder 10)

​Ability to perceive need for healthcare

Participants’ accounts revealed a variable ability to perceive need for healthcare. Many participants described a complicated path to diagnosis that either began with repeated chest infections or COPD as an incidental finding during investigations for other medical conditions. When asked, all patients felt that their health professionals communicated with them appropriately and that they understood what was being said to them. Despite this few could explain what COPD stood for, what the disease process was, with a small number not being aware what it might mean long term:

​A lot of people don't even know what COPD is. Well I didn't. (Patient 4)

​Ability to seek healthcare

Participants’ accounts revealed that knowledge of the health services and equipment they could access for their COPD was far from complete or comprehensive. Of those interviewed several had not heard of PR at all. Most participants spoken to described contact with a respiratory nurse specialist. They described this contact as having been extremely helpful:

​I’ve been good and blessed. I got (nurse name), the respiratory nurse at the hospital and she’s just fantastic. (Participant 11)

Contact with a physiotherapist was also considered helpful. For some participants, this contact with a respiratory nurse and/or a physiotherapist meant that at some point in time, they were provided with written instructions for either breathing exercises and/or or an exacerbation breathing plan. Not all had both and some had neither.

​Ability to reach healthcare

Participants living outside of main centres reported that they had not accessed PR (despite it being offered in two provincial centres). Several participants from Dunedin had undertaken PR. Attendance was reported as sporadic, but worthwhile. The main factors in not attending PR, if offered, were other illnesses precluding its use (comorbidities) or an inability to travel:

​No, I haven't done much in the way of learning about exercises and things. My Arthritis is a big point of my life. That is so painful … (Participant 3) when I was in the hospital she (respiratory nurse) mentioned Pulmonary Rehab but she said it was too awkward for me because of the travel… (Participant 4)

​Ability to pay for health services and attendant costs of managing COPD

The financial costs of COPD reported by participants were many and varied. First, there were the direct healthcare costs of accessing GP care due to the NZ copayment model and the prescription charges:

​Yeah, well, this is what we've found with him, because he'll ring the doctor about whatever is going on with him and they'll say to come on in. So it guess it's another $41.00 to come on in. (Participant 14—partner).

Second, there were the indirect costs incurred: transportation to attend hospital clinic appointments (if patients did not own their own car, or if they had to use their car for more trips because of limited mobility), heating the home and in some cases, where people thought they might be above ‘income thresholds’ (ie, they directly paid the costs of having a home-help). Some bought their own nebulisers or home equipment if they could. Others if informed got these items through subsidised avenues. Having a chronic disease such as COPD was seen as a costly business:

​Oh yeah, everything's expensive now. Yeah. That's another problem with chronic disease, isn't it? The cost of everything. I must admit, I try and manage without going to the GP very often. (Participant 12)

Home support needs were highlighted by participants, with challenges managing at home if acutely unwell:

​But I need somebody at night. I got up a couple of times and ran out of air trying to get to the toilet and I got nobody here. During the day it’s not too bad. I could ring or get somebody. But at night, I’ve got the alarm but they don’t get here fast enough. (Participant 11)

​Ability to engage with healthcare

A key dimension of engaging with healthcare for patients with severe COPD is the need for patients to participate in shared-decision making around current and future treatment decisions.29 Patients talked about both ceiling of care discussions (in hospital) and ACP (provided in many different settings). In each interview where the ceiling of care discussion came up, comments were negative as to how and where it was addressed (eg, at the patient’s bedside in a crisis situation). Participants (and their carers) understood that these discussions were necessary but felt that they were handled poorly:

​When I was in there I had another exacerbation after the one in July. I had this lady doctor … she told me I was going to be dead within 3–6 months and that was the worst experience I've ever had in my life. She was saying you gotta sign a Do Not Resuscitate and I said what do you mean I've got plans to live until I'm 75… At the time I complained about her, she was young. I said I've got plans to live till I'm 75 and she said how old are you now, I said 71 she said NO. I said so how long do you think I've got and these were her exact words you have between 3 and 6 months. (Participant 4)

Some people experienced ACP as positive: they felt good in having had discussions with their family, thinking about the future and feeling they had a plan or some control. A number of participants had already planned their funerals. Although in some cases, this discussion of ACP had not gone further than funeral planning and enduring power of attorney (eg, staying at home or going into residential care). There was another group of participants who did not like to talk about death, not with their family, nor with health professionals. When asked about their care beforehand (ie, ACP in its broadest sense), they preferred not to think about it and thought that ‘what would happen would happen’.