NHS: Death at Home

Baroness Finlay of Llandaff Excerpts

Thursday 8th November 2012 Lords Chamber

[Baroness Finlay of Llandaff]

My Lords, for this timely debate, I draw on the information that I have from the Cicely Saunders research institute, of which I am an external international adviser, and my role in chairing the palliative care strategy board in Wales. The topic of licensing doctors to prescribe lethal drugs at lethal doses is complex, and I do not think that it falls within the title of this debate, but I would simply say that from many conversations that I have had with Dutch doctors many have said that they got it the wrong way round. In Holland, one in 38 of all deaths are by euthanasia, but they still have not established specialist palliative care.

I turn to patients’ desire to die at home. About two-thirds wish to be cared for at home and go on to die at home, followed by a preference for inpatient hospice care, which runs at about 29%. That is an important, large number of people who would like to access inpatient hospices when they feel that home care is not an option for them. The wishes tend to remain constant, but not always; the reversal in trends away from home deaths happened after 2004, when the end-of-life care was instigated, and the numbers have risen to over a quarter for those with cancer who are now at home, but hardly risen at all for those dying from other diseases, only going up from 16.7% in 2004 to 18% in 2010.

For those patients accessing hospice at home services, who provide high levels of hands-on care in patients’ homes, the results are dramatically different. Of those referred to hospice at home services in Wales, 92% of St David’s Foundation patients remain at home. In Pembrokeshire, 89% of Paul Sartori Foundation patients, 32% of whom have non-cancer diseases, remain at home. In Gwynedd, those referred to the domiciliary palliative care teams have achieved 45% home death rates overall in 2010-11. So things can be very different very easily.

The conversation around care and wishes happens early and is dynamic and ongoing as the patient’s condition changes. The conversations must address fears and what is likely to happen, what the family feel that they can cope with and what they feel they cannot—and also dispel illusions around what is not likely to happen.

It is worth noting that the Cochrane review of the literature showed that when palliative care services are available the chance of dying at home is doubled. The impact of patient-focused services aimed at supporting those at the end of life is key. The most important factors that enable home death in the UK are receiving home care and intensive home care, living with relatives, having extended family support, being married, being affluent, and being younger. Interestingly, functionally less able patients seem to be able to be at home more often, probably because home care services find it easier to fit to the needs of a bed-bound patient than an ambulant one.

Socioeconomic status is inversely related to home death rates, and lower rates are also seen in the Chinese, black African and Caribbean populations, probably for multiple cultural reasons. But for NHS policy, two other factors emerge that are crucial. First, when GP visits are more frequent, as rated at three or more visits during the terminal illness, home death rates are higher. So if a guiding principle of the NHS is to aspire to put patients at the heart of everything that it does, then continuity of primary care and the ability for home visiting of the terminally ill across seven days a week will need to be addressed, because disease respects neither the clock nor the calendar.

Secondly, there is a relationship between time that relatives can take off work and their ability to provide home care support. The Canadian compassionate care benefits system warrants looking at carefully in the context of our changing NHS as it may well prove to be the most cost-effective way to support the terminally ill at home. Relatives’ satisfaction with care is greater when home care is achieved; this seems important for children who find hospital or hospice visiting difficult, although I could find no specific study of the long-term effects of hospice at home on the bereaved child’s morbidity.

There are also sound financial reasons to help patients to remain home. The cost benefit is clear: the average length of care is almost 38 days, which in a hospital bed would cost over £16,000. In Wales, as in England, we have estimated hospice at home costs to be nearer one-third of hospice in-patient costs, even when some overnight care is provided.

This debate has looked at home death rates, perhaps because they are easy to measure, but we need to know where people want to live during their final illness and ensure that services are rapidly responsive to need. Above all, staff attitudes must focus on patient need. Attitude costs nothing but the right attitude is of infinite value. If patients do not feel safe and confident in care, they will not be able to stay at home.

We must also reassess some of the insistence of services to have a hospital bed in the home. Many people want to be in their own bed and could be moved quite easily on a sliding sheet. The evidence for the ubiquitous provision of a large invasive hospital bed warrants looking at. It is not patient focused and can effectively destroy a home atmosphere. How can a relative be easily cuddled on a large hospital bed in a small cramped living room? We as healthcare professionals have to be risk aware and not risk averse and prepared to take informed risk to meet patients’ needs. One area that we have instigated in Wales has been to put “just in case” boxes into patients’ homes so that, if symptoms become difficult, fluids can easily be set up and drugs given. Investigations at home should be easy.

I will say a very brief word on the Liverpool care pathway because of the preceding speeches. This important guidance is aimed to roll out the best of hospice care into other places of care. It is not a protocol. It is not rigid. It is important that people assess whether the person is irreversibly dying, whether it is an anticipated and expected death and, absolutely crucially, whether the family know and accept that the person is dying. Is regular review in place? Does the patient need fluids for comfort? Do they need their drugs altering? The planning of regular review is crucial. It is the regular review that detects the person who is not irreversibly dying when people think again. Happily, these patients have so-called come off the pathway. It is not a one-way street. However, if it is being badly implemented at a local level, it warrants investigation. This is crucial.

I quote from a patient’s husband about hospice at home. He said:

“The support we received from St David’s Hospice Care was incredible. Their nurse arrived and co-ordinated everything when my wife came out of hospital and another nurse came overnight: I was amazed at the care and support we as a family received. My wife died at home 16 days later surrounded by her family and a Hospice Care nurse”.

We can provide good care but we have to be flexible.