After working for nearly 4 years within a hospice setting at Wheatfields - a Leeds-based hospice run by national health and social care charity Sue Ryder - I was quietly focused in my thinking that, just as hospitals are the places where people should give birth, so hospices are the best place to die.
In my opinion, a hospice offered a tidier and more controlled environment than dying at home; so it has been a real journey of discovery working as a specialist palliative community nurse, providing care into people’s own homes. All of a sudden, my beliefs and ideas were being challenged.
As a community nurse, part of my role is to enable those who wish to spend their last days at home to do so with dignity, grace and every possible assistance. Frequently within the hospice setting, we use the phrase’having a good death’, but my time in the community has offered me a chance to reflect on what it really means to experience a ‘good death’.
Death is so much more than being free from pain. It includes aspect of control, autonomy and independence. Death is - as Gomas’ states in ‘Palliative Care at home: a reality or mission impossible’ - fundamentally, ‘an essential part of the cycles of life’, and when people die, they need to be enabled to conclude unfinished business with friends and family.
Despite hospice and community palliative care services, many people still die unprepared and suffering. Montaigne urges that death is an important part of life and ‘one should be ever booted and spurred and ready to depart’. However, death is still seen by many as a failure rather than an important part of life.
There are numerous statistics on life expectancy, age at death, place and cause of death, but little about the experience of death. There are approximately 500,000 deaths a year in England. When people are asked where they want to die, the majority state - according to the Department of Health’s End of Life Care Strategy 2008 - that they wish to die at home.
Home is the place where a person can feel safe and comfortable. It is a place where they made their history. At home, the patient can set up their own schedules and have the privacy they desire. However only 14% of those who wish to die at home believe they will receive the care that they need, according to the Marie Curie Cancer Care national survey, Feb 2008. People are frightened they will end up dying distressed and in pain. Accomplishing satisfactory homecare and palliative care for people at home is paramount for a good death and to avoid having to spend their last hours in an unknown environment.
However, since I have started my job as a community nurse, I have realised that there are more restrictions that I had not previously considered. The difference between an individual cared for at the hospice and the same individual’s care at home can be quite dramatic. The hospice is an amazing place and delivers exceptional care, but when a patient is moved out from their own home, it almost feels as if some of their life has been removed just by the physical act of leaving their home. Home is where patients have freedom just to be; they can eat, stay up all night if they want or play loud music as they like.
At the hospice the family is also more exposed to death. We can try to conceal the sight, but not always the sound. The doors to rooms are closed just for a moment whilst we transport the latest departed to the mortuary. By shutting the doors, are we protecting them or enhancing their anxiety? Whilst it might seem uncomfortable to discuss aspects of death or where someone would prefer to die, death remains the last major event in life.
I believe the more we can dispel the silence surrounding these issues and empower people to help plan their last days, the better.
I believe enabling a patient’s ability to direct the last stages of their future in this way is vital; surely discussions within the security of someone’s own environment seem to progress more easily. There will always be beneficial and controversial issues to consider about where to die, and dying at home is certainly not always the easier option. Nevertheless, advance care planning can help to fulfil the person’s wishes around death and dying by managing their expectations and should be developed at an early stage. It is vital to involve family and friends. As the majority of women nowadays have personalised birth plans, it seems logical to come full circle so as to also have a personal plan for end of life care.
As the first gentleman I looked after in the community prepares to die, I just hope I can facilitate his final journey ensuring his wishes to remain with his family and dog at home and be peaceful and pain-free, are fulfilled.
Margaret Dearden is a Specialist Palliative Care Community Nurse at Sue Ryder Wheatfields hospice.