Demand for end of life care in the home: an urgent need for action
Macmillan supports people with cancer and those at the end of their life in a range of ways. We know high quality end of life care is essential, and so during the Covid-19 pandemic, Macmillan have been monitoring the trend of excess deaths in multiple settings and analysing what it means for end of life care. This is what we have found, based on data for England and Wales.
· Excess deaths in the home have been consistently higher during the pandemic than before.
· The trend could in part be explained by patient and family choice to remain in the setting of the home, rather than to enter a hospital or care home.
· Our professionals tell us that there is a lack of resource and capacity in community care, making it hard to meet demand for good quality end of life care at home; in some cases, this means family members will take on the responsibility of providing more care.
· Urgent action is needed to address this situation: more resource must be given to community palliative and end of life care, and community teams providing this care should not be redeployed over the coming months.
Throughout the pandemic, ONS data has reported on “excess deaths”, those which occur over and above the five-year average death rate. While, especially in the first phase of the pandemic, excess deaths have also been taking place in care homes and hospitals, in the week ending 23rd October (Week 43) most such deaths — 95 per cent of those reported in ONS data — took place in private homes.[1] This is illustrated by the graph below.
Analysis from the Nuffield Trust makes a further point: over a third more people are dying in the home than prior to the pandemic.[2]
Insight from Macmillan professionals complements this analysis: professionals we surveyed during the first peak of the pandemic reported an increased demand for end of life care in the community. Whilst they highlighted many instances of good practice in response to this demand, professionals also reported a lack of capacity and resource to meet it. They indicated that because resource has not increased in line with demand, efforts to react to sudden pressures have been hindered.
Some professionals reported that the ultimate impact of these challenges is that in many cases it has fallen to families to provide the end of life care that would normally be the responsibility of — or at least in tandem with — a health or care professional.
Looking ahead, the trend of increased deaths in the home is likely to continue. It is significant that when there were fewer cases of Covid-19 in the late summer, excess deaths in the home remained above average, whilst deaths in other settings fell. We may well see a similar pattern following the second wave of Covid-19.
Though we can’t say for certain what is driving this trend, part of the pattern could be explained by patient and family choice to remain in the setting of the home, rather than to enter a hospital or care home. Factors such as fear of contracting Covid-19 or constraints and confusion related to visiting restrictions could play a part in such a choice. Macmillan has always supported personalised end of life care and giving people as much control as possible over where they die. Before the pandemic, we knew that most people want to die at home if given the choice and with the right support in place, but we are concerned that this increase in deaths in the home has left many people without the right care in place at the end of life.[3]
Alongside these factors, new rapid discharge procedures could be resulting in more people at the end of life being discharged into the community with less formal support available.
This new and challenging context requires an urgent response from Government and the NHS. There must be additional resource for community end of life and specialist palliative care to ensure high quality end of life care and to meet unprecedented demand in the home. Likewise, it would be a serious oversight if community teams providing care at end of life were redeployed away from this vital service over the coming months. Reliance on family members to provide care without the right support should not be viewed as a sustainable option.
References:
1. Deaths registered weekly in England and Wales, provisional: week ending 23 October 2020. [See tabulated data cited in point 5, underneath figure 6 “Data Download”], ONS, 3rd November 2020, last accessed 12th November 2020
2. Chart of the week: Home deaths account for as many excess deaths since start of the pandemic as deaths in care homes, Nuffield Trust, 16th October 2020, last accessed 12th November 2020
3. At the Crossroads: How can the NHS Long Term Plan improve end of life care in England? , Macmillan Cancer Support, 2019
Safiya Jones is a policy officer at Macmillan Cancer Support. You can find out more about the policy and influencing work we do here.
