The needs of a dying person can be complex and emotionally sensitive. They can also be incredibly simple; being with a person to support and care for them can be all they would like.
However, we will only know what people want if we explore our own wishes and talk with those around us. Whatever a patient’s dying wishes entail, it is vital they are empowered to express them. Openness and communication are fundamental to compassionate end of life care.
Failure to acknowledge the elephant in the room can mean that dying people feel shut out of social circles and distanced from their communities. It is only by discussing our wishes early on with those we love and making such conversations a part of everyday life that we can alter this sense of isolation and offset the difficulties that may arise in the final stages of our life.
The Department of Health’s 2008 end of life care strategy called death “the last great taboo in our society”, and identified a “lack of openness and discussion about death and dying”. Dying Matters, which aims to change public attitudes of death, dying and bereavement, is launching a coordinated effort to address this, starting with a national awareness week commencing on 15 March. The support of all health and social care professionals is crucial to the success of the these efforts. Helping staff to empower patients to talk more openly about their dying wishes is one of its main priorities.
‘Addressing death with the right balance of frankness and sensitivity can be a challenge - but it is the sort of challenge nurses must overcome every day’
Nurses have an important role in breaking down the wall of silence around end of life care and are the perfect ambassadors for a more open, communicative approach to it. The compassion that is fundamental to the nurse’s role is invaluable in helping patients and their families discuss their wishes. Death can be an infinitely complex and emotive matter, and addressing it with the right balance of frankness and sensitivity can be a challenge - but it is the sort of challenge nurses must overcome every working day. The end of life care strategy helps in this task with e-learning modules developed around communication skills and advance care planning (accessed via www.e-elca.org.uk).
There are clear benefits to ensuring openness and communication are linchpins of end of life care. It is of indisputable worth to the NHS that patients enter hospitals having considered and discussed their own needs and wishes. Breaking down barriers to thinking and talking about death will help patients make clearer, better informed choices about their care. This clarity is hugely helpful when difficult decisions must be made about organ donation, say, or resuscitation. It is also crucial to meeting the most personal of patients’ wishes, such as whether they would prefer to die at home.
The issue of where patients would prefer to die is illustrative of how important choices can be impaired by silence. If we do not know how to communicate what we want, and those around us do not know how to listen, it is almost impossible to express a clear choice. A recent survey conducted on behalf of Dying Matters found that 70 per cent of people in this country would prefer to die at home, yet 60 per cent still die in hospitals. This is clearly an undesirable and unsustainable imbalance, the redress of which could make high impact cost savings while ensuring the delivery of high quality care.
The NHS Institute for Innovation and Improvement’s High Impact Actions for Nursing and Midwifery report highlighted that an alarming number of terminally ill patients are being admitted to hospital despite having no medical needs that require care in an acute setting. It judged these admissions to be “not only expensive but… often inappropriate and preventable” and went on to argue that patients and families “would benefit by having an opportunity to discuss preferences and choices of where to die and have this supported and recorded”. Reducing these numbers will require the coordinated efforts of all health and social care staff. Nurses are crucial to this.
While some health professionals may deal with death and bereavement every day, an understandable separation exists between their clinical and personal perspectives. The King’s Fund found that over two thirds of GPs have not discussed the type of care they would like when they die, with 42 per cent of them having “just never thought about it”. They argued that “enabling [health professionals] to have clear and informed discussions on death and dying will be a major step on the road to improving end of life care in England”. To empower patients to talk more freely about death and dying, nurses must ensure they have considered their own wishes with the frankness they would encourage in their patients.
As end of life care in England focuses more on openness and communication, nurses’ compassion and expertise will be invaluable. For this to be harnessed effectively, nurses must be properly supported. A more coordinated approach to end of life care will be crucial, with greater partnerships between frontline nurses, primary care trust end of life care leads and end of life care groups. These partnerships should be formed where they do not already exist, and nurses would benefit from identifying and making contact with the end of life care lead in their area.
Support for wider conversation around death, dying and bereavement cannot, however, be purely institutional. Our entire society must engage in these issues.
Lucy Sutton is associate director for end of life care at NHS South Central