By Catherine Proot and Michael Yorke
With recent events relating to the Care Quality Commission (CQC) in the spotlight, and a stream of NHS scandals in the news, it might seem like an appropriate time to ask ‘who cares?’ It is easy to be negative, and the recent management issues and financial challenges within the NHS are disturbing. Ensuring that the Health Service remains free at the point of delivery has brought increasing pressures, so patients who are at the receiving end of the scandals rightly wonder ‘who cares?’
An alternative answer is demonstrated by the fact that upwards of one million people in the UK care faithfully and discretely for a very sick spouse or partner, relative, or friend, and generally in their own home. In addition, there are many professionals in different disciplines and many thousands more who assist as volunteers. The major health institutions will provide the basic supportive services required, but considering that receiving home palliative care doubles the odds of dying at home (Gomes et al, 2013), the role of the home or professional carer is in no way diminished. It is a huge response to an urgent and increasing need which brings with it challenges, both organisational and personal.
The nursing at home of someone with a major illness like a stroke, cancer, or one of the neurological diseases can be particularly stressful. Normal life as previously experienced is tipped upside down. Whatever the circumstance, life for both patient and carer will never be the same again. It is not only the immediate and practical care of the patient that can be exhausting; it is also the psychological response to those age-old questions about mortality, about worthiness for the role, about the future and regrets about past events that cannot be changed. There are so many things, kept suitably or conveniently in the subconscious, which in the new circumstances invade the senses where hordes of other questions have already taken up residence.
The practical challenges, for many people so much more obvious and applicable, cannot be overlooked. Perhaps the patient or carer has had to give up their job with consequential loss of earnings which comes at a time when costs rise for heating the home, paying for some domestic help, or using taxis when the driver of the family is also the patient.
Relationships with the professionals who come to the house must be accepted, maintained, and appreciated for the common good of patient and carer. They will all bring their own expertise to support the love and faithfulness of the home carer. Some people see these visitors as intrusive and invasive of their territory and privacy. This is a sad response, and detrimental to the whole household.
Considering our ageing population, some people called to be a carer are elderly themselves and have their own health problems which can complicate their task greatly. Prof Mayur Lakhani, Chair of Dying Matters Coalition, warns “As the number of people over the age of 85 is set to double over the next 20 years, the UK needs a new focus on health, well-being, housing, care and support for this emerging cohort.”
The palliative care movement has made great progress in dealing with patients as individual people, developing empathy between patient and carer and reducing pain and distress as much as possible. In spite of wide publicity and backing by the leadership of the health services, less than half of the critically ill in the UK are cared for according to these standards. This factor inevitably puts extra strain on family carers as they cope with patients who might be more distressed than is absolutely necessary.
Who cares? When the chips are down, most people do, but they are likely to need support and encouragement. The challenge is to make the palliative care skills and support more widely available in the family home, where the majority of people prefer to be cared for and die. It could be said that caring for a dying person is not a single person’s job, even if it is the most important and honourable one that that person might ever do.
Catherine Proot, Psychological Specialist in Palliative Care and Bereavement Coordinator, St Nicholas Hospice, Bury St Edmunds, UK, and Michael Yorke, Retired Priest and Vice Chairman, The Norfolk Hospice, UK are both authors of Life to be lived: Challenges and choices for patients and carers in life-threatening illnesses, out October 2013.