Risk-taking and innovation: a view from the Nuffield Trust

At a recent meeting on the role of philanthropy, held at the King's Fund, London, the first ever assessment of the amount of money spent by charities on health in London was presented. The combined total each year—including hospitals, charities and large and small grant-making trusts—came to £473 million (about US$680 million)¹. Charities have been called ‘the last free agents’—independent bodies free to invest where they see the need. This privileged status comes with a great responsibility—to be flexible and to take risks. We must use our combined resources to do what individuals cannot. We must use our political latitude to go where government will not. And we must make a difference.

Of the £473 million spent by charities on health in London each year, 51% goes to clinical, biomedical and medical scientific research but only 6% to community-based projects and care. According to funders there is a simple reason for this difference—that clinical researchers make the best applications. However, we have a duty to ensure that important areas of research and care are not neglected. The bottom-line question is, are we maximizing our investments for the greatest return? Specifically in this case, are we adequately funding community care?

FROM PATERNALISM TO PARTNERSHIP

Many UK philanthropies admit to adopting a passive role when awarding grants, waiting to see what applications come in, and then choosing from them. This approach naturally leads to a bias towards funding of proposals from experienced high-profile grant writers, at the expense of worthy but hidden areas of need. Another barrier to directing funds to new and worthy areas has been the tendency among UK philanthropies to follow the research agendas set out by the National Health Service (NHS) and universities. Many have been satisfied to fill in the gaps of NHS funding and support the NHS agenda. In certain areas of care the NHS has come to rely on this independent support. But innovation requires risk—thinking outside the box of existing agendas, looking beyond existing institutions to seek out needs and alternatives for meeting them. UK philanthropies are slowly becoming more strategic and proactive with their investments, first deciding on their priority areas of need, then searching out potential partners in the field and targeting funding to make a difference where change is most wanted. Investments are thus directed into health rather than institutions. This requires more effort and involvement on the part of the charity—in learning to seek out new talent, new issues, and new or neglected areas of care—but strategic, targeted investment into areas of great need can bring great reward.

A CHARITY'S CONTRIBUTION: CARE FOR THE DYING AND THE NHS

In September 2000 the Nuffield Trust sponsored a conference on Care for the Dying and the NHS, bringing together professionals and others with different viewpoints to generate practical ideas for improvement. It began with a background paper from Dr Julia Addington-Hall on care for the dying in the NHS and the reasons why care is sometimes poor. Many of the policy recommendations from this meeting (the ‘Buckinghamshire Declaration’, see Box 1) were simple—yet had the potential to substantially improve patient care. Probably the most common complaint about care of the dying concerns poor communication between those delivering care and the patient or patient's family. The participants identified a need to ensure that doctors, nurses and others who care for the patients are trained to listen and speak with patients and families sympathetically and supportively; to do so without shirking the need to talk about death and dying and to respect patient's wishes as far as possible. We also found that health professionals themselves need support, resources and time to deliver a good quality of care. Patients and their families also need clean facilities, appropriate nourishment, personal privacy, good nursing care, spiritual support and clear lines of communication and responsibility. A patient shouldn't have to wonder, ‘To whom do I turn now for help?’.

Care of dying patients at home requires that good systems are in place to ensure continuity of care, particularly at night and at weekends. The provision of patient-held records may facilitate this process. Robust handover procedures for all staff are vital in both hospital and community settings. The conference saw the need for rolling out the existing expertise in the care of the dying, beyond those with specialist skills and knowledge of terminal care, to all NHS staff.

Box 1 The Buckinghamshire Declaration Abbreviated version of document prepared at Horwood House, Buckinghamshire, 13-14 September, 2000 [www.nuffieldtrust.org.uk]

Care of the dying and the NHS

• An evidence-based document on best practice should be made nationally available for use by health professionals

• The quality of services to the dying needs to be audited

• Attitudes, both public and professional, need to change

• Central Government should take a lead in setting national standards for provision of and training in care of the dying

• In each hospital and healthcare setting there should be clear lines of responsibility for ensuring that basic equipment and drugs needed to care for dying patients are available in adequate quantities, every day of the year

• Attitudes among staff need to change, paternalism/maternalism being replaced by a spirit of partnership with patients

• The nursing profession must continue to encourage its members to prove that they are safe to practise and safe to teach others

• Further beacon-sites of excellence should be identified, and used to disseminate good practice to staff throughout the NHS

• Risk assessment of the bereaved can enable special help to be made available to those who most need it; it should be offered more widely.

Many of the deficiencies identified by the conference could be remedied with small financial investments. Some were attitudinal—the need for a shift in staff attitude from paternalism/maternalism to partnership. Patients should be offered choices about treatment and doctors must learn that the death of a patient is not always a failure. Early medical education and continuing professional development should emphasize care of the dying as an essential part of disease management and not an ‘add-on’ extra. Other changes are more basic yet no less important—from ensuring clean bedlinen and pillows to offering privacy for a family and patient in the last stages of life. These proposals, which could bring changes that really matter to patients, illustrate how philanthropy can shed light on an important topic—or, more accurately, bring a topic to the forefront and allow those with expertise to share their knowledge.

A STRATEGY FOR GIVING

The Nuffield Trust has prided itself on a proactive investment strategy. We actively seek out and commission work that fits our areas of interest while remaining open to new ideas that come to us spontaneously. We see ourselves as philanthropic venture capitalists, providing seed money for development. The Nuffield Health and Social Services Fund was the first to provide interest-free loans to hospices, to allow programmes to get up and running. As venture capitalists our policy is to: seek returns over the medium to long term; accept that risks must be taken but minimized by sound staff work; act as a principal, not an entrepreneur; and engage with a wide range of partners in developing new ideas and turning them into practice. This does not mean that we intend to manage health services or research organizations. We aim to develop a business-like relationship with those whom we fund or support.

It is not our intention to be the main financiers of projects, but rather to provide the initial working capital to enable ideas to be brought to the point at which they can be taken to established funders. We will always wish to have an exit strategy, so that when activities and projects become mainstream we can switch to new ideas and remain at the cutting edge of research and policy studies. Independence and seeding will continue to be our hallmarks.

CARING IN ACTION

In his book An Ethic for Health Promotion², David Buchanan examines the concept of ‘caring’, which he sees as the expression of solidarity with fellow community members. He draws on the argument of Jean Elshtain³ that solidarity ‘is not a feeling of vague compassion or shallow distress at the misfortunes of so many people but a determination to commit oneself to the common good: that is to say to the good of all and of each individual because we are really responsible for all’⁶. And Buchanan quotes Bellah's important distinction between caring as a sentimental psychological attitude and caring as responsible practice⁴. Solidarity is embodied in social practices that strengthen people's dignity and autonomy.

To maximize our impact, strategies on care of the dying need to be based on shared philanthropic values. We must be willing to innovate and take risks, we must share a commitment to social justice, we must respect and foster diversity, and we must be relentless in our quest for knowledge. Charities would do well to adopt the maxim of the US Institute of Medicine—putting the best minds in touch with the hardest problems. The aim of charities that support health services and policy research must be policy analysis with a view to action.