NHS: Death at Home

Lord Bishop of Norwich Excerpts

Thursday 8th November 2012 Lords Chamber

[The Lord Bishop of Norwich]

My Lords, I am grateful to the noble Lord, Lord Warner, for securing this important debate. We should probably all declare an interest as speakers since the one certainty is that we shall all die. We speak of dying as a process which occurs in the last stages of life but since, each day, we are moving nearer to the moment of our death, we could be said to be dying all the time. Living and dying are not separate experiences, and we want those in the last stages of life to live well so that they may die well.

It is an entirely understandable human desire to die at home, which I am sure is an aspiration we should meet, while recognising that not all who wish to die at home will die best at home for them or their relatives, as the noble Lord, Lord Dubs, has illustrated.

Many years ago, when I was a newly ordained curate, an elderly lady of great faith and serenity said to me, “I don’t fear death but I’m scared of the mechanics of dying”. It is a frequently repeated sentiment. If anything, the mechanics now concern people even more, given the complexity and range of possible medical interventions. The longing to die at home is understandable if the fear is of a long, drawn-out and possibly distressing process in a hospital ward where there is not even the comfort of familiarity.

Therefore, it is no surprise that hospice care for the dying rates so highly among bereaved relatives. As we have heard in VOICES’ national bereavement survey, 92% of relatives of those who died in hospices rated it as good or excellent care, which is a very high rate of satisfaction in any sphere of activity, let alone one as sensitive as this. Yet if I interpret those figures correctly, that same survey revealed that 71% of those relatives said that the dying person had wished to die at home and that their own desired place of death would be similar.

How is the contrast in the figures explained? I think that even relatives who are highly satisfied with hospice care of their loved ones know that only a small number of people die in a residential hospice—just 6%. Even the best hospice experience does not replace a natural longing for our home as the most reassuring place to spend our last days. The challenge must be to ensure the best approximation of the quality of the hospice experience at home, which is possible, as the noble Lord, Lord Howard, has illustrated.

My wife is a palliative care nurse and I observe how, alongside excellent pain relief and medical care, she and her colleagues include relatives very effectively in the practical care of patients. The freedom from prescribed times of visiting and the ability of relatives to stay overnight are important but the unforced inclusion of relatives in the practical care of patients is liberating and humanising both for them and for the patient. The hospice context gives the relatives confidence that the whole person is being cared for and helps them to be effective carers.

Such things are possible in the home environment but it can be much more testing for the relatives and the patient. That will be especially the case if we encourage dying at home at a time of financial stringency because it is cheaper. It will need considerable investment; yet in Norwich there have been recent cutbacks in the provision of palliative care at home. We seem to be going the other way. I hope that the Minister can give us a crumb of comfort. Many relatives are glad to be volunteer carers, but without good induction, support and respite, they can easily become overextended and exhausted, and their anxiety or disappointment in themselves disturbs the loved one for whom they are caring.

Earlier this week, I was told of a patient who was sent home to die from hospital while in the last stages of lung cancer. His family had not been warned that the cancer had enveloped his pulmonary artery. A slight bleed led to him being hospitalised again. A few hours after his relatives had left, he had a catastrophic bleed, which flooded his bed immediately and rendered him unconscious. Had it happened at home, it would have been horrendous for the family and would not have provided the sort of death which lay behind their corporate desire for him to die at home.

Just over 30 years ago, Philip Toynbee, the writer and literary critic, died of cancer. He kept a sort of spiritual journal of his final months, which was published after his life as End of a Journey. He had come under the influence of a community of contemplative Anglican nuns in Wales whose calm, ordered and prayerful life was a big but attractive contrast to much of his own. In his last weeks, Philip Toynbee was concerned that he might die on the operating table when a last procedure was suggested. He said he did not want to be deprived of the proper stages of dying. He said, “I want to learn all I can from it.”. I have never forgotten that rather deep and unexpected phrase. If we approach the dying as we would the living, enabling them to learn from the experience rather than believe they have nothing left to learn, then we will always treat them with immense dignity.