Palliative Care Provision by Rural General Practitioners in New Zealand

Introduction

The New Zealand Palliative Care Strategy (NZPCS) ¹ aimed to give people who are dying and their families good access to palliative care services. The definition of palliative care we have used was produced by the Palliative Care Subcommittee of the NZ Cancer Treatment working party and is based on the World Health Organization (WHO) definition of palliative care. ² Submissions on the NZPCS noted the importance of access for people in rural areas, the need for greater recognition of the role of the general practitioner/family physician (GP) and the need for sufficient community care and social support to allow people to die at home. Specialist palliative care services in New Zealand are available in the 6 major cancer centers while local services such as district nursing, community physiotherapy, and social work are provided by the 21 District Health Boards. The District Health Boards and Cancer Centres are funded by the Ministry of Health and services are free to patients. Larger cities in New Zealand generally have a community hospice that will be managed by a Community Trust and receive funding from donations as well as support from their local District Health Board. GPs in New Zealand are independent practitioners. While there is some capitation funding for GPs from the state, most patients pay a fee for each visit or service. GPs public funding is provided through primary health organizations (PHOs) some of whom have a capped palliative care budget from which GPs can claim. Because of the distances involved, the lack of consistency between District Health Boards in funding palliative care services and because community hospices are only found in larger centers there is variability in the support available to rural GPs.

Internationally there has been little research into palliative care provision in rural areas. A systematic review in 2003 concluded that rural primary care professionals found difficulty in accessing specialist advice, had problems in symptom control and in providing bereavement support. ³ A more recent review concluded that health care professionals involved in rural palliative care identified themselves as multiskilled generalists and palliative care was a small proportion of their workload. ⁴ The aim of this study was to ascertain the workload involved for rural general practitioners providing palliative care and to identify any perceived barriers to care for patients living in rural areas of New Zealand.

Methods

A cross-sectional survey of rural general practitioners was undertaken. The participants were all rural GPs identified by the New Zealand Institute of Rural Health in a recent workforce survey. ⁵ We defined a rural GP as someone who received the rural bonus. To receive this bonus the GPs are judged on six criteria including how far away they are practicing from a public hospital, how close they are to another practice, the requirements for on-call out of hours, etc. Approximately 14% of New Zealand's GPs are eligible for the rural bonus. We adapted a questionnaire from one used to examine palliative care services provided by rural Australian doctors. ⁶ Key questions that were included asked about: access to hospital beds, specialist palliative care advice, knowledge of palliative care, nursing services, and equipment. We also asked about the numbers of patients being seen, where patients had died, how many patients were referred to specialist palliative care services, and what costs had been passed onto patients and their families. Some brief demographic data (age group, gender, and geographical location of the practice) were obtained. Questionnaires were posted to each GP with a stamped addressed envelope. A repeat questionnaire was posted to those who had not responded after 4 weeks. Ethical approval for the study was granted by the Ministry of Health's Northern Y Ethics Committee.

Results

We sent out 440 questionnaires and received 186 responses (42.2%). Sixty-eight percent of respondents were male. The age distribution of the doctors in our study were 2 of 186 (1%) age younger than 35 years, 88 of 186 (50%) age 35–50, and the remainder (49%) were aged over 50. Ninety-eight percent (184/185) of respondents said they were involved in palliative care provision; 98% (179/183) said they provided home visiting for palliative care patients—on average 1–2 visits per patient per week. Rural GPs had variable access to beds for their palliative care patients: 33% to a local public hospital; 23% to hospice beds; 51% to a rest home, and 15% to other beds. The mean estimated number of palliative care patients looked after by rural GPs was 7.3 per year and at the time of the survey the mean number they were looking after was 2.4 patients. The age or gender of the doctor did not seem to influence the number of patients being cared for (Table 1). The proportion of patients with cancer was 5.21 of 7.26 (71.7%); noncancer conditions included chronic obstructive pulmonary disease (COPD), heart failure, end-stage renal failure, and motor neuron diseases.

Specialist Advice

Rural doctors identified three key groups that provided them with advice: specialists in palliative care based in the 6 main cancer centers, 63 of 186 (34%); specialists based in hospices, 79 of 186 (43%); and physicians providing services at a local hospital, 14 of 186 (7.5%). The main difficulties encountered in obtaining advice were: trying to contact a specialist who may be away on holiday/at a conference; trying to get a patient into a hospice bed and the specialist being busy in a consultation. Most GPs (77%) were satisfied or very satisfied with the communication that they received from the local hospital, 68% with the tertiary hospital and 82% with hospice.

Support from Other Health Professionals and Equipment

Ninety-eight percent (174/180) had district nurses visiting their patients at home. In addition 22% (40/180) said their practice nurse did home visiting for palliative care patients and 49% (88/180) of doctors said they had hospice nurses visiting. Only 72% (130/180) said nurses were available after hours. Access to occupational therapists, 41% (68/167);physiotherapists, 43% (71/165); and social workers, 49% (84/171) was less comprehensive. Most of the time GPs were able to access equipment for their patients, usually acquired from the District Health Board with the help and cooperation of the district nurses. The hardest to obtain was domiciliary oxygen where 32% (57/178) of doctors said they had difficulty, then specialist beds, 18% (31/176) while only 10% (10/183) said they had difficulty getting a morphine pump, and 11% (30/177) a wheelchair.

Place of Death

Doctors estimated that 46.5% of patients that they had looked after in the last year had died at home. A number stated that although patients may express a wish to die at home they often change their mind later. Reasons doctors gave as to why patients who wanted to die at home were unable to do so were: (1) caregiver unable to continue, 42%; (2) symptom control, 25%; (3) patient choice, 11%; and (4) need for investigation, 5%. The next most common place of death was a nursing home or rest home (24.8%), followed by the local public hospital (16.7%), hospice (7.2%), and base hospital (4.8%).

Payments

Eleven percent of general practitioners said they did not charge palliative care patients at all and no subsidy was available while another 60% did not charge their patients but obtained a subsidy from their PHO. Eighteen percent charged their patients and received no subsidy. Eleven percent received a PHO subsidy but stated that earlier on in the disease they may have charged the patient.

Knowledge

The majority of GPs felt their current level of knowledge of palliative medicine was very good 47% (90/185) or good 11% (21/186) with 37% (69/186) stating they had acceptable knowledge. Most GPs (65%; 102/157) said they would like more training in palliative care in the form of either online teaching, CME evenings or lunches, and a palliative care specialist visiting them to offer CME.

Discussion

Palliative care is part of the role of almost all rural general practitioners in New Zealand. They care for, on average, 7–8 palliative care patients per year. This is similar to the findings of an Australian study in which rural doctors looked after an average of 7.4 patients per year. ⁶ Rural GPs undertake approximately 3–5 home visits a week for palliative patients. This is complemented in some practices by visits from the practice nurse. Although this may be a small workload for an individual practice and reflects the findings from other studies, ⁴ at a national level the total resource represents a significant commitment that would otherwise have to be met by secondary care. Our doctors noted that a very high proportion of patients said they would like to die at home. From the survey it appears that an estimated 47% of patients died at home whilst supported by their GP. This is better than the figure of 33% from New Zealand overall, ¹ 34% in a United States study, ⁷ and 18% in the United Kingdom. ⁸ It has been shown that persistent involvement by a GP is associated with improved end-of-life care for patients with cancer. ⁹ A systematic review showed having GP support and living rurally were both factors associated with increased chance of dying at home. ¹⁰

Coordination of palliative care in urban areas of New Zealand is often difficult to organize due to the competing interests of providers and the siloed funding streams. In rural areas care is usually coordinated through general practice. Rural GPs acknowledged the availability of community nurses but 28% did not have access after hours. The principal nursing services in rural areas came from district nurses, 49% said they had hospice nurses available and 22% of responses indicated their practice nurses also provided clinical care in the home. The involvement of practice nurses is interesting and maybe a feature specific to rural general practice where nurses often take on a wider range of roles. The survey also revealed that rural doctors had patchy access to a range of support services including physiotherapy, occupational therapy, and social work. This should be addressed by district health boards to ensure rural patients have equal access. Access to equipment was generally high although domiciliary oxygen was a problem for some. Financial barriers do not seem to have prevented GPs providing palliative care in the community, but if the primary care support for palliative care is to continue then it would seem essential that the financial support from the PHOs remains available to practices.

Other concerns raised in the NZPCS were about access to specialist services. Most GPs reported that they had good access to specialist advice. Some difficulty arose when the individuals relied on by rural doctors were on leave or unavailable and cover arrangements for palliative care seems to be needed in some centers. GPs in rural areas also look after a proportion of noncancer patients with conditions such as COPD and heart failure. Advice in these cases might also be sought from relevant specialists. The proportion of noncancer patients GPs looked after was perhaps higher than expected. This maybe an artefact of the funding arrangements, where subsidy for provision of service requires a specialist to diagnose terminal illness. However, it is pleasing to see that patients without cancer with life-limiting illness are able to access palliative care services.

GPs overall were satisfied with their knowledge although 65% said they would like more training in palliative care. Walker and MacLeod ¹¹ also found that GPs in New Zealand had a good understanding of palliative care issues although the authors identified some deficiencies. One of these deficiencies was said to be knowledge about when to refer to a specialist. Comments from the GPs we surveyed suggested knowledge gaps could be filled through online teaching, CME evenings or a palliative care specialist visiting them to offer CME. Specialist centers might take this request into consideration when considering their support for general practitioners.

A potential weakness of the study was the response rate: only 42% of rural doctors responded to the survey although this is in line with the response rate found in similar studies. It maybe that the views and experiences of nonresponders are different from those who did complete the questionnaires. However, the age and gender of respondents was similar to the expected demographic profile or rural GPs in New Zealand and suggests that our respondents are similar in some ways to the non respondents. This survey was from the view point of rural GPs. We acknowledge that relying on their recall may also introduce a bias but we believe that it is useful to try and quantify GP workloads.

Overall the commitment to palliative care from rural GPs appeared high. Wider availability of specialist advice and a commitment to providing 24-hour nursing cover and support services such as domiciliary oxygen would ensure that patients had equitable access to services. This study, based on the estimates of responding GPs, suggests almost half of rural patients in New Zealand needing a palliative care will die at home. In the United Kingdom it is predicted that less than 1 in 10 will die at home in 2030. ¹² If the trend toward institutional care that is apparent elsewhere is transferred to rural areas then inpatient facilities must increase substantially. Either way with the aging of the population more people will need community end-of-life care. We need to ensure that we have sustainable models of care and a suitably supported workforce to make sure that quality palliative care continues to be available to rural patients.