Introduction
Aims
Methods
Results
Discussion
References

 

 

 

 

Introduction

The gathering of mortality data in general practice is a useful exercise both educationally and in terms of highlighting local health needs, as well as gaps in service provision. Although not a contractual obligation, we also believe it enhances transparency about clinical practice. This practice-based study, a collaboration between two GPs and two senior nurses with managerial responsibility for care homes, is a retrospective analysis of 50 consecutive deaths, in which we gathered data on the age at death, cause and place of death, whether or not the patient had expressed a desired place of death, and how that correlated with actual place of death.

Chorleywood Health Centre is a four-doctor teaching practice with a list size of 6,800 located in a mixed suburban/semi-rural commuter zone to the North-West of London. Though the area is affluent, there are high levels of healthcare need driven by a substantial elderly population. The two local nursing homes account for 1.2% of the practice population; however, this cohort has substantial levels of significant morbidity, and accounts for a large proportion of end-of-life care. The practice has a culture of autonomous patient management, including palliative care, and has published two previous mortality surveys.1,2

 

Aims

The two broad classifications were based on pathology (deaths from malignancy versus non-malignant disease) and place of death. As our broad ethos is to manage end-of-life care in the community whenever it is reasonable to do so, deaths occurring in patients’ own homes and nursing homes, whilst considered separately, were jointly classified as ‘home’ deaths. The key questions asked were whether having malignant or non-malignant disease affected the likely place of death, and, for those patients who expressed a wish to die in a particular setting, what proportion had their wish realised.  

 

Methods

The practice records all notified deaths in the electronic patient record; the place and cause of death are noted. Where necessary, reference was made to the stubs of death certificates and hospital reports, including post-mortem examinations. The subjects were 50 patients of the practice who died consecutively in a period from May 2017 to February 2018. For each patient the age, place of death and cause of death were recorded; in addition, when noted in the medical or nursing file, the desired place of death was recorded. Note was made of patients whose cause of death was made by post-mortem.

The cause of death was recorded with a focus on any underlying chronic disease, which in practice meant sometimes using line 1b of the death certificate rather than 1a. For example, if a patient died from bronchopneumonia with underlying chronic obstructive pulmonary disease (COPD), the COPD would be deemed the cause of death. The causes of death were classified by organ systems. The malignant neoplasms were listed in decreasing order of frequency.

 

Results

Table 1 shows the numbers, ages and place of death of this cohort. Amongst the 50 deaths, 22 were men and 28 women, with an average age at death of 83.1 years. 23 of these were residents in nursing homes, and of these 20 died in their nursing home. With a further nine dying in their own homes, it means that a total of 29 (58%) died at home, 18 (36%) died in hospital and three (6%) in hospices.

 

TABLE 1 – Numbers, ages and place of death of patients in survey

Total number of deaths

All patients:    50 (100%)

Males:     22 (44%)

Women:     28 (56%)

Average age at death

All patients:    85 years

Males:     83.1 years

Women:     86.4 years

Place of death

Own home:     9 (18%)

Nursing home:    20 (40%)

Hospital:     18 (36%)

Hospice:    3 (6%)

Cause of death

Deaths were initially classified by organ systems, and a detailed breakdown is given in Table 2. Deaths from circulatory disease and malignant neoplasms are listed in Table 3.

 

Table 2 shows the cause of death by organ systems. The most common single cause of death was dementia with 10 cases, and with two cases of Parkinson’s disease it means that neurodegenerative disease was the largest broad pathological category of death (24%), followed by respiratory (11 cases [22%]). Overall, 38 (76%) died from non-malignant disease and just 12 (24%) from cancer. In eight cases (16%) the cause of death was ascertained by post-mortem.

                                     

TABLE 2 - Classification of death by organ system

Cardiovascular

Ischaemic heart disease:

5

Congestive cardiac failure:

2

Pulmonary embolism:

1

TOTAL:

8

Cerebrovascular

Stroke:

6

TOTAL:

6

Respiratory

Pneumonia:

5

COPD:

2

Lung cancer:

3

Pulmonary fibrosis:

1

TOTAL:

11

Gastrointestinal

Colorectal cancer:

1

TOTAL:

1

Hepato-biliary system and pancreas:

Hepatocellular cancer:

1

Pancreatic cancer:

1

TOTAL:

2

Kidney and urinary tract

Chronic renal failure:

1

TOTAL:

1

Male reproductive system

Prostate cancer:

2

TOTAL:

2

Neurological

Dementia:

10

Parkinson’s disease:

2

TOTAL:

12

Psychiatric

Suicide:

1

TOTAL:

1

Others:

Frailty of old age:

2

TOTAL:

2

                                     

Table 3 lists the malignant causes of death, showing lung as the most common (three cases) followed by two each of pancreas, prostate and lymphoma.

                        

TABLE 3 – Deaths due from malignant neoplasms

Lung:

3

Pancreas:

2

Prostate:

2

Lymphoma:

2

Myeloma:

1

Colorectal:

1

Hepatocellular:

1

TOTAL:

12

 

Of those 12 patients with cancer, seven (58.33% of the cohort) died at home or in a nursing home, three (25%) in hospital and two (16.67%) in a hospice. Of the 38 with non-malignant disease, 22 (57.89%) died at home or in a nursing home, 15 (39.47%) in hospital and one (2.63%) in a hospice.

26 patients (52%) had expressed where they wished to die, and in 25 cases this was in their own homes or a nursing home; the one exception was a patient who desired hospice care (which was realised). Recording was, however, much more punctilious for nursing homes (18 of 23 residents [78.26%]) than for those being managed in their own homes (8/27 [29.63%]. Of this cohort, 24 (92.31%) died where they wished.

 

Discussion

At the outset, the limitations of a small sample size, where small numbers may significantly skew percentages, must be acknowledged. However, we believe that useful conclusions and discussion points emerge from our analysis, especially as the practice has had earlier published data.

Comparison with the more recent of those aforementioned papers2 shows that the already high life expectancy for both men and women has increased; in that survey the average age at death was 77.7 and 85.2 years respectively.2 Our current data also demonstrates the significantly narrowing gap between male and female life expectancy, consistent with the national trend.3 In both surveys the cancer death rate was low, and with regard to individual cause of death, the most striking feature of this study is the emergence of dementia as the leading primary cause.

Dying at home is viewed as important by patients, with 50–60% expressing a wish to do so.4,5 Sadly, this is realised all too rarely: national data trends analysed by Gomes and Higginson indicate that home deaths showed an inexorable decline to around 18%,6 with around 10% dying in nursing homes;6 by contrast a significant majority of 58% died in hospital.6 Although our figure for deaths in the patient’s own home is the same as nationally, it is clear that an established trend locally is for nursing homes to become a ‘home from home’ in the last few years of life, and the significantly lower proportion of our local population dying in hospital when compared with national data is encouraging.

What is also encouraging is that there are no significant differences between either the desired place of death (for those who expressed it) or the actual place of death, for patients with cancer and those with non-malignant disease. Increasing cancer survival has been one of healthcare’s stand-out successes in recent decades.7 However, this has meant significant readjustment for palliative care services, which have historically had a slant towards malignancy;8 indeed, successful domiciliary end-of life care for non-malignant disease has proved more challenging.8

The three main illness trajectories described by Murray et al9 may be the reason for this. In cancer, there is usually a steady progression and a clear terminal phase, coinciding, in practice, with the point at which treatments cease to be effective and decompensation occurs.9 By contrast, illnesses such as COPD and heart failure show a gradual decline punctuated by acute exacerbations, predictable in concept but not in precise timing, and often the cause of admission to hospital and/or death.9 A prolonged gradual decline is typical of dementia;9 as our own figures testify, the needs of this cohort in the community have rapidly increased.

A particular feature of our area is the large amount of end-of-life care undertaken by nursing homes, with considerable success. Whilst it is impossible to quantify exactly what role care plans have had in this, the fact that a high percentage of residents and their relatives had discussion about end-of life care indicates appropriate engagement with this cohort, and willingness by staff to confront society’s unhelpful taboo around the discussion of death.10 We must also acknowledge, however—again without being able to incontrovertibly prove it—that this may in part be due to the virtual collapse of district nursing in many parts of the country, particularly marked in affluent areas with high housing costs.

Whilst the drift of experienced nurses from stressful clinical work to well-remunerated managerial roles is understandable at an individual level, it removes them from the clinical frontline where they are needed as never before, and is indicative of the misguided priorities of much of the NHS centralised bureaucracy.11Nonetheless, the model that has emerged in our locality appears to work well, and requires continued good engagement between nursing homes and primary care. In turn, there should recognition by CCGs and central government that practices in affluent non-metropolitan areas such as the Home Counties and Thames Valley contend with large workloads generated by the very elderly, which current funding arrangements, particularly the weighted list size, don’t quite acknowledge.  

 

Edin LakasingGeneral Practitioner, Chorleywood Health Centre, Hertfordshire

Alison E. James, General Practitioner, Chorleywood Health Centre, Hertfordshire

Sarah B. Parry, Assistant Manager, Chorleywood Beaumont Nursing Home, Hertfordshire

Fortune Mutero, Manager, Burford House Nursing Home, Hertfordshire

Conflict of interest: none declared

 


References

1. Lakasing E, Mahaffey W. A practice-based survey of mortality patterns and terminal care provision. British Journal of Community Nursing 2005; 10: 378–80

2. Lakasing E, Sparkes C. A practice-based survey of mortality revisited – what trends in end-of-life care are emerging? British Journal of Community Nursing 2010; 15(5): 236-40

3. Office for National Statistics. National life tables, UK: 2013–2015. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/bulletins/nationallifetablesunitedkingdom/20132015 (accessed 11th April 2018).

4. Seamark D, Blake S, Brearley SG, et al. Dying at home: a qualitative study of family carers’ views of support provided by GPs community staff. Br J Gen Pract 2014; 64(629):  e796–e803

5. Higginson IJ, Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systemic literature review of patient preferences. J Palliat Med 2000; 3(3): 287–300

6. Gomes B, Higginson I. Where people die [1974-2030]: past trends, future projections and implications for care. Palliat Med 2008; 22(1): 33–41

7. Mayor S. Cancer mortality is falling across Europe, but some countries have twice the rate of others. BMJ 2009; 339: b5158

8. Murtagh F, Preston M, Higginson I. Patterns of dying: Palliative care for non-malignant disease. Clinical Medicine 2004; 4(1): 39–44

9. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005; 330: 1007–11

10. Lakasing E. Death’s worsening taboo: is hampering the provision of high quality palliative care. Br J Gen Pract 2014; 64 (622): 243

11. Lakasing E. Please can we have our nursing teams back? Br J Gen Pract 2017; 67 (654): 26