Care of the Dying

David Burrowes Excerpts

Tuesday 17th January 2012 Westminster Hall

[Mr David Burrowes (Enfield, Southgate) (Con)]

I welcome the opportunity to talk about care of the dying. It is marked that so many hon. Members are attending the debate on a subject that so many people in our constituencies would rather not talk about.

Last year, a ComRes poll found that 67% of people are scared of being told that they are dying. More significantly, 83% are scared of dying in pain. As a nation, we need to get better at talking about dying, death and bereavement, but Parliament can take a lead in breaking the cycle that can result in a lack of care. With the public reluctant to discuss end-of-life care, many professionals do not feel confident to deliver it. Services are not available to everyone who needs them. The aptly named Dying Matters coalition, across the public, voluntary and private sector, should be commended and supported when it has its annual awareness week in May.

Too often in health care, dying equals failure rather than a normal process. This attitude ignores those who will not respond to treatment, but who can still be cared for significantly. Although death may be a tragic inevitability, palliative and hospice care can ensure that the remainder of life is still worth living. We have an opportunity today to show the mark of a civilised society and care for the vulnerable and largely forgotten—the dying.

The growth of palliative care, not legalisation for assisted suicide, should form the central debate about care for the dying. As a country, we must do all that we can to allow the terminally ill to live a dignified life until death, to make the intolerable tolerable and to replace hopelessness with hope and desperation with serenity. Too often, this essential part of health care is forgotten, or simply shrouded by the more high-profile issue of assisted suicide. Reading media reports this year, one could be forgiven for thinking that that is the only option for those suffering with terminal illness. Rather than legislating for an abrupt end to life, we need to find better ways to help care for the dying.

The good practice of palliative care, which hon. Members will no doubt illustrate this morning with constituency examples, makes the point that we in this country believe that life should be treated with dignity at every stage through to death. Some 50 years ago, Dame Cicely Saunders, founder of the modern hospice movement, said:

“You matter because you are you, and you matter to the last moment of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

What a refreshing contrast from what we have heard recently from those advocating assisted suicide. Take the chilling words of Baroness Warnock, who said:

“If you’re demented, you’re wasting people’s lives—your family’s lives—and you’re wasting the resources of the National Health Service.”

Suggesting that we have a “duty to die”, she said:

“I think that’s the way the future will go, putting it rather brutally, you’d be licensing people to put others down.”

Well, that is not a future I want to be a part of, and I am sure many of those present today agree. [Hon. Members: “Hear, hear!”] If we adopted the law of Oregon, the trickle of people wanting to be killed in places such as Dignitas would become a flow—some estimate that more than 1,000 people a year would take that path.

[Andrew Selous (South West Bedfordshire) (Con)]

Does my hon. Friend agree that one of the most worrying things is that, if what he is talking about is introduced, many older people may feel that they are a burden and that they should bring an end to their lives?

[Mr Burrowes]

Indeed. We need to retain the present law, which continues to provide a strong deterrent to the exploitation of vulnerable people, while giving prosecutors discretion in hard cases. Parliament has agreed, through a detailed Select Committee inquiry and three votes in the past six years, to retain that protection. We have to recognise that it is easy, in the comfort of Parliament, to make fine-sounding points about terminal illness. I recognise that there are no easy answers for those who feel they are not valued and who may feel that they may be wasting resources or are a burden on their family or society. However, they are the very people who most need the protection of the law and the provision of good-quality palliative care. How do we best safeguard their dignity and autonomy?

When we talk about dignity in the context of a health debate, it can all too often be restricted to privacy and physical care, but palliative care recognises a wider, proper understanding of dignity. Good palliative care recognises the social, emotional, spiritual and psychological needs that put an embrace around a terminally ill patient, rather than the proposed arbitrary, so-called safeguards that put a straitjacket around patients and doctors. For example, the prognosis for a terminally ill patient is notoriously difficult to determine. The best safeguard is through specialist palliative care that helps a patient live with uncertainty. Take the case of a motor neurone disease sufferer who wants to end his life but, unknown to his GP, has developed fronto-temporal dementia and whose thinking has become distorted. Such a condition could only be noticeable if someone knew that patient very well before the illness. The best safeguard to help the patient live with those fluctuating moods and thoughts is specialist palliative care. The proper way to empower patients’ choice and protect the vulnerable is through driving up palliative care standards, not new legislation.

In 2010, the Economist Intelligence Unit ranked Britain, rightly, as top of the league of countries for the provision of end-of-life care. Much of the credit is no doubt due to the expansion of local charitable hospices that provide more than £700 million of care, the majority of which is donated by the communities that they serve. Additionally, more than 100,000 people donate their time to local hospices each year.

[Nicky Morgan (Loughborough) (Con)]

I congratulate my hon. Friend on securing the debate. The fact that there are so many hon. Members here at 9.30 on a Tuesday morning shows what an important subject this is. He talks about local hospices. The Rainbows children’s hospice, which is in my constituency, now looks after young adults with life-limiting conditions as well. In this debate, we will perhaps focus on older people, but we should not forget children with life-limiting conditions. One point that the hospice has made to me—I think that my hon. Friend is coming on to this—is the fact that we need to integrate both health care and social care. Rainbows children’s hospice would like to see more of that from the Minister.

[Mr Burrowes]

I am grateful for that point. Integration is needed, and we see that in the context of hospices and palliative care. We hope for that future in the reforms that are going through Parliament.

Although we should be proud, rightly, of individual examples in our constituencies, we should not rest on our laurels. We need to build on that solid foundation, because far more can be done. End-of-life care is not available to everyone who needs it. In fact, the palliative care funding review found that 92,000 people die in England every year without access to the services that they need. That figure equates to nearly 500,000 people during the term of this Parliament, and 700 people in each of our constituencies dying without the good palliative care services that they deserve.

Nationally, hospices receive about a third of their funding from the NHS, but that can vary substantially across the country. Indeed, in my constituency in Enfield, the NHS contributes less than 20% of what the hospice spends on care for Enfield patients. One of the biggest issues facing the terminally ill is where they will die. Currently, more than half the people who die in England do so in hospitals and just 20% die at home, although various studies have shown that two thirds of people would choose to die at home.

In Enfield, there are excellent palliative care services. I pay tribute to Nightingale Cancer Support Centre and North London hospice, which provides a community service providing care in people’s homes alongside an in-patient unit. In Enfield, the North London hospice community team are able to ensure that only 28% of people cared for by the hospice die in hospital.

According to the Minister, the Government should consider allocating national resources to continue to promote and extend palliative care. I look forward to hearing from the Minister about the progress in implementing the new per-patient funding system for hospice and palliative care providers, which will provide incentives to enhance services within community settings.

[Guy Opperman (Hexham) (Con)]

Will my hon. Friend give way?

[Mr Burrowes]

I will conclude in a moment, because a large number of colleagues want to contribute.

Jean Rostand, the French biologist, said:

“For my part I believe that there is no life so degraded, debased, deteriorated, or impoverished that it does not deserve respect and is not worth defending with zeal and conviction. I have the weakness to believe that it is an honour for our society to desire the expensive luxury of sustaining life for its useless, incompetent and incurably ill members. I would almost measure society’s degree of civilisation by the amount of effort and vigilance it imposes on itself out of pure respect for life.

I look forward to hearing hon. Members demonstrate that respect for life, for the dying, today.