OPINION

Death and dying: a community perspective

28 December, 2011

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.

Readers' comments (15)

DH Agent - as if ! | 29-Dec-2011 11:15 am
As Margaret coments:

'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.

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.'

I think Margaret has covered many of the 'insights' which are all too-often lacking, in her short but very informative piece !
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Anonymous | 29-Dec-2011 11:31 am
"People are frightened they will end up dying distressed and in pain."

...and ALONE!
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Anonymous | 29-Dec-2011 11:42 am
Excellent insight. Let us hope that this side of care can be further developed to adequately fulfill the needs and wishes of those who choose to spend the end of their life at home in the best possible conditions and at the same time provide the essential level of support required by their carers and families.

I can imagine for nurses there are downsides in this more isolating and professionally autonomous work away from the immediate security and support of the hospice surroundings as well as a very positive and rewarding side that excellence in care brings.
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DH Agent - as if ! | 29-Dec-2011 3:09 pm
Anonymous | 29-Dec-2011 11:31 am

"People are frightened they will end up dying distressed and in pain."

...and ALONE!

I feel sure that many people are horrified by the idea of dying alone - but isn't the point that the patient's choices should be facilitated ? So, if someone has a dread of dying alone, then that person would probably wish to be in a hospice or hospital, and not at home - so that is what should happen !

But, everyone only has one experience of dying, and it is 'personal and specific to the individual' - the NHS is 'trying to shoe-horn the dying into a sort of 'average conformity'' much more than I believe is appropriate, for death !
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Anonymous | 29-Dec-2011 4:41 pm
michael stone | 29-Dec-2011 3:09 pm

give it a rest!
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Anonymous | 29-Dec-2011 5:32 pm
I hesitated to comment on this page as i had a presentiment that it would not be possible without interjections from Michael Stone, and despite my new year's resolution not to read any more of his misplaced and tiresome comments.
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Anonymous | 2-Jan-2012 6:11 pm
Oh good its not just me who finds Michael tiresome then? I too intend to avoid him but just wanted to give my support to other like minded individuals.
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Anonymous | 2-Jan-2012 6:57 pm
Anonymous | 2-Jan-2012 6:11 pm

I think it is a matter to be taken up again and discussed with NT editors.
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Anonymous | 3-Jan-2012 9:29 pm
Well i work with a Hospice at home team who support the patient and family at home who die pain free and in there home with loved ones around them people who are alone but want to die at home still get the same support with the help of Marie Curie nurses and specialize nurses and agencies Hospices Doctors are also involved with supporting of anyone who wants to die at home 24hrs care we provide in the community there is a lot of specialized teams out there if only they are used more . i think the way forward is to train more Nurses in the community about palliative care the support is out there if you look
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victoria jordan | 5-Jan-2012 9:04 am
'as hospitals are the places where people should give birth' misguided on both counts then
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Jodie's mate | 5-Jan-2012 1:12 pm
What is it you want to raise with the editors exactly?

The fact that a lowly non-nursing member of the public DARES to think he's allowed to have opinions on healthcare matters?

Or the fact that he challenges you and has opinions different from your own?
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Anonymous | 5-Jan-2012 6:28 pm
A brilliant example of how what we think as nurses, directly informs how we advise patients what is in their best interests. A brave piece as Margaret has had the courage not only to ask the questions but also to change her mind and her practice accordingly when faced with a challenge to her established beliefs.
Having just had very recent experience of this subject I am so glad that nurses such as Margaret are in the specialist positions in the community. Experiences at this time are not only confined to this time but inform all of the future for the people left behind.
My enduring wish is that good, skilled, compassionate and joined-up care in the community were more the norm than it it is currently. My second wish would be the same for secondary care.
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Julie Fagan | 9-Jan-2012 2:38 pm
From a care home manager who provides end of life care:-
Thanks for this; it made interesting reading. From my point of view co- ordinating end of life care is a balancing act of the person's needs, the family's needs and the medical support that is available. In the person's own home they still feel in control and are actively encouraged to make the decisions; it is also the environment in which they usually feel safe and secure. We are able on the most part able to control sound and lighting and the smells should all be familiar.

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DH Agent - as if ! | 9-Jan-2012 3:14 pm
Geeze - as far as I can work out, both are considered to be valid objections, by various anonymous posters.

There is invariably a lack of explanation as to why my opinion is flawed, beyond 'he can't understand this because he isn't a nurse' (dubious, logically, on 2 counts: that of patient perspective, of that of sometimes the settled expert position is subsequently proved to be wrong - see Wigner {if I remember his name properly} and continental drift, for example.

But this vitriole on NT is truly weird - I am currently debating various issues with a collection of 'NHS experts' (consultants, ethics experts, etc) and none of them claim that my arguments are flawed simply because I am not a clinician ! Some do claim, however, that I am annoying - but most accept that the issues I raise are valid, and that the 'answers' are complex, and look different according to one's perspective.
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Anonymous | 10-Jan-2012 3:26 pm
I agree with victoria jordanand I feel I cannot take anything seriously from someone who believes that hospitals are the place people should give birth in. A person has the right to decide where to give birth and where they want to die and as health professionals our own experiences can help to guide patients. Our own opinions are purely our own and patients must do what is best for them. Our job is to help them fullfil their wishes as best we can. We need to be mindful this or we are in danger of taking away choice.
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