Journal of the New Zealand Medical Association, 12-October-2007, Vol 120 No 1263
Evaluation of the Palliative Care Partnership: a New Zealand solution to the provision of integrated palliative care
Eileen McKinlay, Lynn McBain
A basic human right at end-of-life is to receive quality palliative care. Ensuring that all who need palliative care receive it, challenges healthcare funders and providers.
The components of the Palliative Care Partnership (see Figure 1), have been fully described by Stewart et al.1 In brief, as apposed to specialist palliative care services provided by hospices, the Palliative Care Partnership (PCP), funded by MidCentral District Health Board (MDHB) consists of generalist palliative care provided by a partnership of general practice teams (GPTs) (including general practitioner (GP) and practice nurse(s) (PN) from the same practice); specialist palliative care provided by registered nurse palliative care coordinators (PCCs) and other hospice staff; and health management services by Compass Health.
GPT attendance at induction and update interdisciplinary education provided by the Arohanui Hospice Education Unit and supply of a decision support manual are prerequisites to commencing PCP service provision.
Once formally accepted into the PCP, patients are assessed by PCCs, care-plans formulated and care given by the partners with the support of MDHB district nurses (DNs). A PCP management group provides oversight and quality assurance.
Figure 1. The MidCentral District Health Board Palliative Care Partnership
A mixed method evaluation approach was utilised.2 Methods included qualitative interviews of a purposeful sample of stakeholders, analysis according to pre-determined evaluation questions of routinely collected quantitative data, and an audit of newly implemented ‘shared’ care-plans used by the PCP partners. The Central Ethics Committee approved this study in February 2006.
Interview schedules were developed in accordance with MDHB PCP contract specifications, tailored to participant group, and iterative according to participant involvement. The partner organisations committed to work closely with the evaluation team to ensure mutual understanding of the PCP and evaluation process.
Face to face or telephone interviews were undertaken in early 2006 and continued until data saturation was reached3 with interviews audiotaped and transcribed.
Data from interviews were analysed by the research team using inductive thematic analysis,4,5 identifying themes either held in common or disparate between those interviewed, and themes that coincided or were different from the literature. Member checking6 for resonance was undertaking at the project midpoint by presentation and discussion of early findings. Data analysis was considered within the broad contract specification components and these components are used to report the results.
Sixty-three people were interviewed either individually or in focus groups
(see Table 1).
Table 1. Interviews undertaken
Referral management—Referrals to the PCP are made via a one-point entry system to Arohanui Hospice by a variety of health providers including GPTs; specialist palliative care services; secondary health services; DNs; Māori health providers (MHPs).
Referrers report a streamlined entry into the PCP with prompt assessment by a PCC. A small number of patients are declined entry to the PCP, typically the aged who also have a ‘slow’ terminal illness or those thought to be too early into the palliative care phase.
GPs felt early entry into the PCP maximised effective palliative care for patients, family and clinicians although PCP funding stakeholders have concerns over sustainability of early entry and longer care trajectory.
I try and involve people as quickly as I can...there’s really no point in me getting Arohanui involved if you’ve only got 3 days to die because you’re not going to get any great benefit out of it (GPA Location 6)
Stakeholders feel individuals may still ‘miss-out’ on palliative care particularly those transient or not enrolled in general practice; Māori; have chronic illness or are still being ‘actively’ treated for a palliative illness.
...what they do miss out is not so much about hospice care (it’s all health care). If you start with deprivation you go out with deprivation...And there are some people who don’t culturally identify with these services, like they just don’t perceive they need them or want them or are scared of them (GPA Location 5)
Service provider—The evaluation confirmed GPTs in the PCP comprise GPs and PNs who hold current practicing certificates, having undertaken three sessions of mandatory and then update education. The majority of MDHB’s GPs (n=56) belong to the PCP. All GPTs who have joined the PCP have cared for at least one patient.
Specialist palliative care assessment—A standardised assessment is undertaken by a PCC integrating “physical, spiritual, cultural, and psychosocial elements of the patient and family/whanau.”7
Five PCCs employed by Arohanui Hospice work in defined geographical areas with particular GPTs, DNs and aged care providers. PCP partners report PCCs hold pivotal roles and as having close interpersonal relationships with referring partners.
GP clinicians spoke warmly of the individual PCC they work with, regarding them as close collaborators.
...the good thing with the partnership is that I know (the PCC’s) phone number by heart, I can phone her up any time I need to or want to. We know each other well enough now to know what our abilities are...(GPA Location 1)
And supporting provision of after-hours care.
There’s also an important issue about getting more comfortable to take on a palliative care patient now with this new contract. Because prior to it you felt isolated about providing after-hours cover (GPB Location 2)
PCCs also support aged residential care providers.
...now they get in touch with us more, so that they’re ringing us more often. Yes definitely now and the process is a lot more defined now—like before we were sort of maybe missing a few bits of information that probably now is quite vital...(aged care team leader)
Planning—PCCs develop a plan of care with patient and family which is a “...living document to which all parties contribute and update.”7 The care plan is retained in the home in a satchel of other information and is intended to be taken to medical appointments.
I think having the folder. They can go home and think “Now what does that mean?” They’ll ask. I think they are a lot more empowered...if they are too unwell and don’t (want) to be bothered, quite often someone in the household will read it ...(PNA Location 1)
A sample of ‘shared care-plans’ used by partners giving in-home care usually at end-of-life, were audited against criteria for completion of assessment, care-plans, goals for care and completion of progress notes. All records met the criteria for completion by both DN and PCC and one record for completion by DN, PCC, and GP.
Provision—In New Zealand, historically GPs, DNs, and families have undertaken provision of palliative care. In the last 30 years, hospices have played a major role in both advocating for and providing in-patient and community palliative care services. An unintended consequence sometimes expressed was of hospices taking-over the general practice palliative care role.
...before this (the PCP) happened I tended to lose my patients as soon as they went into hospice. (Now) the ones I have, we were able to keep in touch (GPA location 4)
In contrast, the PCP aims to intentionally support general practice to provide early sustainable palliative care to patients and family often known for many years.
I think the other thing that helps for us and for our patients is that they know we’re involved and for a lot of our patients we are their doctor, whichever one of us. And whichever one, or one of the nurses, are their nurses...(GPB Location 2)
GPTs felt well supported by the content and manner in which the specialist advice was offered by the specialist hospice staff.
I trust them implicitly...and it’s very good that they are at the end of that phone, 24 hours per day. So if you have any doubt, and you think “Oh, I don’t know about this”, you can ring somebody (PNA Location 1).
From the inception of the project in mid 2004 until September 2006, there have been 585 patients in the PCP. Ethnicity recording is incomplete with numbers classified as ‘unknown’ or ‘other’. Currently there are lower then MDHB rates of Māori, Pacific, and Asian.
Of the $400 per patient able to be claimed through free or subsidised consultations or home visits, between 2004 and September 2006 the average cost per patient was $152.52, with only 34 patients exceeding $350 of claims.
There have been 2191 claims on PCP funding with a range of between 1–25 claims per GP with 11 GPTs caring for more than 15 patients, 34 GPTs caring for 5 to 14 patients, and 12 GPTs caring for 1 patient. Most PCP patients had cancer (55%), or cardiovascular and respiratory conditions (9%) and the balance ‘unknown’ or ‘other’. The most frequent reasons for making a claim (given that a GPT could claim for up to four items at one time) were medical consultation (28%), repeat prescription (29%), medication review (12%), symptom control (10%), and pain management (8%).
GPs appreciated being able to offer patients PCP-funded visits (CarePlus funding was being implemented during the study and funding interfaces yet to be addressed). Remaining patient barriers to PCP care noted were cost of transport and/or medication, particularly medication not currently PHARMAC subsidised.
GPs also felt being able to claim the PCP subsidy encouraged them to retain their patients when they needed palliative care.
Its been nice as a GP not to be out of pocket for going to see people rather than basically doing freebies all the time...ok, cost does get in the way of clinical practice, there’s is no doubt about that (GPA Location 1)
PNs involvement in the PCP has not entirely embedded. Whilst PNs were pleased to be included and valued the induction education, they did not always feel this preparation translated into day-to-day work and were reluctant to ‘claim’ for PCP activity.
I can’t say that I’m always that good at it (claiming) and there’s often like phone ones that I will talk, well talk to someone on the phone about how they are going and unless someone says to me did you claim that or remind me (PNA Location 5)
Some PNs felt there were already enough people involved in providing palliative care whereas others described significant but often unarticulated roles including phone consultations to check-up on people, addressing or referring-on symptom control issues, accessing benefits, clarifying/reiterating medical information, organising scripts or DN support, finding equipment or smaller-size clothes and post bereavement support.
DNs hold a key role in the PCP although are not formal partners. Similar to general practice, they typically have longtitudinal relationships with patients and family often prior to referral into the PCP. DNs noted changes since the PCP began including an increased workload with more patients being cared for in the community and lines of communication changing from liaison with hospice staff to liaison with the GP and support from PCCs.
Monitoring and measurement—The PCP management team represents the different partner organisations. It operates under an annually reviewed Terms of Reference, with regular minuted meetings and receives and considers internal reports, audits, evaluations and routinely collected data and modifies business rules as necessary. The PCP management team comprised a stable and highly effective workgroup.
Commitment to the partnership has overcome previous perceived philosophical differences.
I think it’s really functional. There’s a lot of openness. There’s a lot of trust. And we do come to that table and we do have grievances and it can get a little bit testy at times. But we work through it and it doesn’t go outside that room. We work through those issues (MIPA/Compass Health key stakeholders)
Each partner organisation has their own internal quality assurance and variation was noted between these. Areas not currently audited include patients declined entry into the PCP and the auditing of palliative care delivery in general practice.
Education for general practice teams—Attendance by a GP and PN(s) from the same practice as a team has fostered a sense of team work as well as achieving proven educational outcomes from interdisciplinary education8 ensuring all partners were aware of current best practice palliative care.
GPs appreciated the update in symptom control, pharmacology knowledge and information about social and psychological services.
...not something you probably learned about before...they had some really neat algorithms and things to help us treat different symptoms and conditions (GPB Location 4)
PNs valued the educational content, and that they were paid to attend and at the same rate as GPs.
I really liked the fact that the GPs and the practice nurses did it together because of the stuff was very medical and it was really good to be in on that and to have more of an understanding ...And then the flip side of that...there was a lot of nurse talk...Some of the GPs I thought gained more of an appreciation about perhaps the way we approach things (individual PN interview)
GPTs valued of the ‘purple’, reference manual and the researchers noticed that GPs shelved it close by their desk.
...the other thing that’s benefited has really being educated more about how to manage terminally ill people. There’s a very good brochure booklet, the folder (purple folder) that we use. (GPA Location 6)
The experience of Māori receiving palliative care services—MDHB strategy has a strong focus on meeting the needs of Māori and in considering whether new services adequately redress existing inequality.9 A hui (meeting) facilitated by the former Kaiwhakaruru Hauora Māori/Māori Health Advisor for MDHB resulted in discussion about barriers to health care and wider cancer care; only those relating to the PCP are reported here.
There are eight MHPs within the MDHB region.10 Of these, two provide GP services and can offer PCP care. Being able to simultaneously enrol with a MHP and also with a GP practice may act both as a facilitator and a barrier to accessing PCP services.
The experience of patients/family/friends—Patients and family/friends each hold a different yet equally valid viewpoint complementing that of the health professional stakeholders.11,12–14
Current patients were very satisfied with care from the PCP. They appreciated the skill and human warmth of those involved (including family) and the frequent contact and assessment.
Patient difficulties included difficulty or delays in obtaining equipment or other services, financial concerns due to medication payments and duplication of services. Not everyone was aware of services accessible through the Cancer Society or Work and Income or Ministry of Health (transport allowance).
All but one family/friend were satisfied with past PCP care; the person not in agreement had had a family member being cared for in an aged care setting.
Family/friends suggested night-carer relief, more personal care assistance, financial and practical help in improving the home environment to assist care; and not all were aware of equipment and support available.
Evaluation is a key component of health services research. It aims to describe and record change and what has led to change, establish whether there are linkages between theory and practice,15 generate new knowledge and/or enable application of knowledge to other contexts.
Specialist palliative care teams are known to improve palliative care patient outcomes16 but limited work has been undertaken to evaluate models of primary palliative care supported by specialist palliative care.17–20 Research undertaken suggests services are cost-effective.21,22 No similar New Zealand work has been undertaken although a recent New Zealand report highlights the need to do this.23
In the MDHB region, the PCP partnership grew from an almost simultaneous recognition by different stakeholder groups that there was potential for a different service delivery model appropriately utilising the skills of generalist and specialist clinicians and providing patient and family with seamless palliative care services from the time of referral.
The skill of implementing an integrated service is not just in meeting the service specifications but also ensuring there is effective collaboration between partners. The utility and functionality of the joint management group, utilisation of a care pathway24 including induction education, use of PCCs , and reference manual with decision support has facilitated this. Care pathways use standardised information and are believed to minimise delays, facilitate and prioritise use of resources, specify anticipated treatment events, and build in quality processes, with the overall outcome being quality patient care.15
Across the country, MHPs hold DHB contracts for specific healthcare services,10 for example to monitor diabetes. In this study contracts for specific care had the potential to result in silo-ed delivery. An example given was of a MHP nurse being funded to monitor a person’s blood pressure in their home but not being funded to address the same person’s palliative care needs.
People registered with a MHP without GP services and not concurrently enrolled with another general practice do not have straightforward access into the PCP (as a GP provider is a PCP requirement). Even those in a MHP with GP services are not eligible for subsidised medication.
Concerns noted in the Findings regarding equipment availability are not unique to the MDHB or the PCP. Third parties including ‘needs assessment services’ and occupational therapy review generally broker access to DHB-funded assistive equipment for any service including palliative care. This creates barriers both for clinicians in knowing what is available; whether the equipment is in stock and timing of supply and also for patients and family in knowing what equipment might be available and appropriate to ask for. In MDHB, when aware of need, PCCs actively advocate for equipment however can struggle to arrange supply or timely supply.
Limitations in this study include pragmatics of time, cost, and practical difficulty limited the number of stakeholder interviews particularly patients and families and although a sampling framework identified key categories of people, not all opinions were canvassed.
Triangulation of results and use of routinely collected quantitative data aimed to minimise these effects similarly research protocol, and standard procedure for independent qualitative data analysis was rigorously maintained.
Data analysis shows the implementation of the PCP to be considered, staged, and supported by standardised mechanisms. Quality improvement mechanisms have been built-in at many stages and particularly through the joint management team processes. The external evaluation has made process improvement recommendations for each partner to be actioned by the PCP management quality assurance process.
In conclusion, the PCP is delivering comprehensive, holistic, and integrated palliative care incorporating both generalist and specialist palliative care skills to people and families/whānau and at a modest cost to the MDHB. The current service meets and exceeds current service specifications and has diversified beyond the original service brief. It is a model that should be considered for utilisation by other New Zealand and international health funders.
Competing interests: Eileen McKinlay and Lynn McBain convene a teaching programme for fourth year medical students called Palliative Care in the Community.
Author information: Eileen McKinlay, Lynn McBain; Senior Lecturers; Department of Primary Health Care and General Practice, Otago University, Wellington. (In addition, Eileen is a registered nurse and Lynn a general practitioner.)
Acknowledgements: We acknowledge the funding and support of the MDHB in undertaking this study and thank the partner organisations including Arohanui Hospice, Compass Health, and general practices in the region. We also thank patients/family/friends who took part in this study, in particular those who have since passed away.
Correspondence: Eileen McKinlay, Senior Lecturer in Primary Health Care, Department of Primary Health Care and General Practice, Wellington School of Medicine and Health Sciences, Box 7343, Wellington South. Fax: (04) 385 5539; email: email@example.com
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