Background The UK National Institute for Health and Clinical Excellence guidelines state that palliative care options for people with Parkinson's disease (PD) should be discussed.
Aims To investigate whether palliative care guidelines are adhered to for people with PD who die in hospital.
Setting/participants The medical notes of all people with a diagnosis of idiopathic PD who were living in two adjacent areas of northeast England and who died over a 3-year period were examined. Demographic data and specific information regarding events around the time of death were recorded.
Results For the 236 patients identified, the average age at death was 82.8 years. Of these patients, 110 (46.6%) died in hospital, 56 (23.7%) at home, 59 (25.0%) in a care home and for 11 patients (4.7%) the place of death was not recorded. For those who died in hospital, only three patients, and seven relatives of patients, had had a recorded discussion with a clinician regarding their preferred place of death and only 15 (13.6%) were referred to a specialist palliative care team. Forty-six patients (41.8%) were placed on the Liverpool Care Pathway.
Conclusions For those dying in hospital, there are few previously documented end-of-life care discussions with patients or their relatives. The use of end-of-life pathways and access to specialist palliative care is variable. Following the Neuberger report, the Liverpool Care Pathway is to be replaced with individual end-of-life care plans. It is important to engage patients, and their relatives, in decision making regarding preferences at the end of life.
- Neurological conditions
- Chronic conditions
- Clinical decisions
Statistics from Altmetric.com
Parkinson's disease (PD) presents with a range of motor and non-motor symptoms that generally become more difficult to manage medically as the disease progresses. These symptoms can complicate decision making with regards to end-of-life care.1 ,2 There has been an increasing recognition that people with PD may benefit from specialist palliative care. In the UK, the National Institute for Health and Care Excellence notes that the palliative care needs of people with PD should be recognised at all stages of the disease.3 The National Health Service (NHS) End-of-Life Care Strategy recommends greater choice for all patients in their place of care and place of death, fewer emergency admissions for patients who would prefer to die at home and fewer transferred from a care home to hospital in the last weeks of life.4 The National Council for Palliative Care (NCPC) has produced specific guidelines for the management of people with PD.5 They recommend that opportunities for advanced care planning should be considered. Dopaminergic medication should be continued at the end of life in cases where it may help to reduce symptom load, though documented case-by-case assessment is advised. The uses of soluble medication (eg, dispersible madopar), apomorphine, skin patches (eg, rotigotine), nasogastric (NG) tubes and percutaneous endoscopic gastrostomy tubes as alternative methods of drug administration should be considered.
The aims of this study were to investigate whether the NHS end-of-life care guidelines4 and the NCPC PD specific guidelines5 were being followed. Specifically, whether the wishes of people with PD, and their relatives, were sought during the latter stages and whether the Liverpool Care Pathway (LCP) was used. The use of the LCP has previously been accepted to provide, and be evidence of the provision of, good quality end-of-life care, and it has been used as such in this research. However, the recent Neuberger report recommends phasing out the LCP and replacing it with individualised care plans, highlighting the need for tailored care with good communication at the core.6 We, therefore, recognise the limitation of using the LCP as a proxy for good end-of-life care.
People were included if they had a diagnosis of idiopathic PD (UK brain bank criteria), were under the care of the Trust's PD service and resident within the study area at the time of death. Those who died between 1 January 2008 and 31 December 2011 (Northumberland area) and 1 January 2008 and 31 December 2010 (North Tyneside area) were included. Previous PD prevalence studies by our team have demonstrated that the PD service is responsible for well over 80% of people with PD in the Trust's catchment area.7 ,8
We reviewed hospital notes and recorded data relating to gender, age at diagnosis, age at death and place of death. For those who died in hospital, the use of the LCP and do not attempt resuscitation (DNAR) documentation during their final admission and any recorded discussions with patients, carers or relatives regarding end-of-life care wishes were noted.
One hundred and sixty-eight people met the inclusion criteria in Northumberland and sixty-eight in North Tyneside. See Otable 1 for demographic and clinical details. Results for the two areas were remarkably similar. Although slightly more people died in hospital in urban North Tyneside compared with rural Northumberland, the difference was not significant (χ2=0.907, p=0.341). Interestingly, only one patient was recorded as dying in a hospice.
For the 110 who died in hospital across both areas, in only 10 cases (9.1%) were end-of-life discussions with either the patient or a relative documented. No patient had put in place an advanced care directive. The LCP and DNAR instructions were used in 46 (41.8%) and 82 (74.5%) cases, respectively. In Northumberland and North Tyneside, the median time on the LCP prior to death, for those who died in hospital, was 2 days (IQR 0–5 days) and 1 day (IQR 1–6 days), respectively. In Northumberland, the median time from admission to death was 14 days for those who were placed on the LCP (n=30) and 15 days for those who were not (n=45). In North Tyneside, the median time from admission to death was 11 days for those who were placed on the LCP (n=16) and 7 days for those who were not (n=19). At neither site was this difference significant by Mann–Whitney U test (U=666.5, z=−0.092, p=0.927 in Northumberland and U=106.0, z=−1.526, p=0.127 in North Tyneside).
Admission to hospital during the palliative phase of any illness can be disruptive.4 This is especially so in the case of people with PD where medication and care regimes can be affected.1 The proportion of deaths in the hospital reported here is similar to that reported in a previous study by our team.9
The abrupt removal of anti-parkinsonian medication in people with PD will often worsen their symptom load and hasten decline.1 If swallowing is impaired, then alternative forms of administration should be considered.10 Of those who had swallowing problems, almost 60% had an NG tube put in place, although the use of rotigotine patches and apomorphine was much less common. All but three of those who died in hospital and were on dopaminergic medication had it stopped on starting the LCP, but the length of time on the LCP prior to death was very short.
The goal of reducing inequity and providing palliative care to patients with non-malignant conditions should be on a basis of need rather than diagnosis.11 However, the practical application of this principle is not straightforward.12 Long-term neurodegenerative conditions, such as PD, often have a less predictable disease trajectory than malignant diseases, making predictions of prognosis and identification of the end-of-life stage difficult.1 In our study, less than half of those who died in hospital were on the LCP, which may reflect this difficulty, with a reluctance to categorise someone as dying when the situation may be reversible. Only a small minority of people with PD, or their relatives, had documented discussions with clinicians regarding their wishes for end-of-life care. Patients, and their relatives, may be unwilling to acknowledge they may be close to death if they have been living with a condition for a long time.13 Relatives of people with PD are often unaware of end-of-life care services that are available and so can be ill-prepared.14 Two recent studies that looked at the experience of relatives of people with PD concluded that palliative care needs were not being met and that an integrated multidisciplinary approach was needed.2 ,15 Our results would tend to support these findings.
Nevertheless, this is a complex area and initiating discussion is often difficult and can be complicated by physical and cognitive decline. In a study of 47 caregivers of people with idiopathic PD who had died, almost half of the patients were described as unable to make any decisions in the last month of life.14 Furthermore, 68% of patients had difficulty communicating, and 47% were confused. Ascertaining patient's wishes and preferences for the future can be understandably difficult if left to a point where communication or cognition is impaired.
The main limitation of this study is that we relied on retrospective data recorded in patients’ medical notes. It is possible that end-of-life care discussions were held but were not recorded. When DNAR orders are put in place and when patients are placed on the LCP, patients are informed when possible, and discussions with relatives held, although this is not a legal obligation in the UK. However, if the wishes of patients and relatives are to be taken into account, it is important that any discussions on this subject be recorded. We did not differentiate between people who died as a consequence of PD and those who died with PD as a comorbidity. However, the prevalence of complex symptoms and the lack of documented end-of-life discussions in our patient group would merit better provision of end-of-life care regardless of the cause of death. We acknowledge that we will not have identified all cases of PD within the catchment area. We have previously conducted two prevalence studies with prospective case ascertainment using multiple overlapping sources in the study areas.7 ,8 As such we are confident that those identified are representative of all those with PD within the geographical areas.
Finally, a further limitation of this research is that we have presumed (in part) that the use of the LCP demonstrates good end-of-life care, as it has been the gold standard for many years. This pathway has now been shown to be flawed and it is to be phased out and replaced with individualised care plans, but we have presumed that the broad principles outlined in the LCP may still represent an ideal of care at the end of life in many cases.6
People with PD may have disease-specific complications at the end of life, and the recent publication of PD specific guidelines is welcomed.6 Our study suggests that more could be done to ensure that the wishes of patients and relatives are canvassed and documented and that consideration is given to continuing PD-specific medication where possible at the end of life. It should also be recognised that before people with PD are deemed to be in an end-of-life stage, they should be adequately dopaminergically replaced since their symptoms can rapidly deteriorate if they are not able to take their medication. Future work should prospectively investigate the palliative care experience of people with PD, particularly of those who died outside of hospital. The Neuberger report’s call for individualised end-of-life care plans may help facilitate the complex care of patients with PD, including difficult end-of-life discussions with patients and their families.6
We would like to thank all members of staff at Northumbria Healthcare NHS Foundation Trust who assisted in data collection.
Contributors This study was conceived, organised and executed by RWW, DC, FD, BW and WKG. Data collection was done by MS, AR, CL, JH and CJDT. Statistical analysis and writing of the first draft of the paper was done by WKG. All authors were involved in the preparation, review and critique of the final manuscript.
Competing interests Maria Samuel, Amy Ramsell, Claire Lawrie, Jessica Hill and Christopher Threapleton carried out this work in part fulfilment of the requirements of their medical degree at Newcastle University.
Ethics approval This study was registered with, and approved by, the Northumbria Healthcare NHS Foundation Trust. The requirements of the Caldicott guardian were met. Ethics approval and informed written consent from patients were not required for this audit.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No unpublished data are available.
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.