At the end of the day...

by guest author Freda Lacey 

PAVO Senior Officer, Health & Social Care

“Dying Matters”. This subject was the focus of an entire week this past May. In Welsh, “Byw Nawr”, (Live Now). During this week, I felt drawn to actively take some action on my own Living Now and Dying Matters.

Powys Teaching Health Board (PTHB), along with a number of health care agencies, particularly hospice care agencies, which includes Third Sector, (ie: The Bracken Trust), held various events during the week. The aim was to encourage people to speak openly about death and dying, discuss what advance planning is, and also how to cope with dying, death and bereavement.

Several weeks ago now, PAVO’s Health and Social Care Team held a joint “engagement” session, with PTHB colleagues, the Third Sector and other agencies, exploring cancer and end of life or palliative care. We discussed a number of topics but one of the key themes which emerged was in relation to “Advance Care Planning” which includes “Statement of Wishes and Preferences”, “Advance Decisions” and “Lasting Power of Attorney”. However, the above care planning implies that someone is in health care and/or on a patient pathway of some sort.

I’m not sure about anyone else, but I don’t usually think about my death or the death of people I care about. It seems to me a topic shrouded in fear, perhaps just thinking about it may propel it to happen sooner than I’m ready? I wonder if there is a type of stigma, perhaps unspoken, associated with death? Mostly I reckon it’s about how someone dies. Generally when we hear of someone’s death, we almost always ask, how? Do we then go on to judge what is a good death or a bad death? In what way might this influence our thinking (or not) about our own death experience?

I’ve been reflecting on how we can be affected by someone’s death by suicide, how this can have a lasting effect on us, or if someone dies from alcohol consumption, or cancer brought on by smoking, or dying of a drug overdose. What does this leave us with? Does it leave us with an unexpressed fear in relation to ourselves?

In my family, and whilst living in Powys, I have experienced my fair share of bereavement; my Mum dying when I was turning 12, two of my first cousins who have both died from suicide in recent years in really difficult circumstances, two of my closest uncles who both died from complications due to alcohol dependency, a beloved neighbour who died due to complications of pneumonia. All of them died in ways that could be seen as having had a “bad” dying experience. There is a saying that it is not death we fear, but dying. So, is it the process of dying that matters most to us?

By contrast, I have experienced the death of a very beloved aunt, a surrogate mother. She lived to a good age of 86. She had been in and out of hospital for some time and we all knew she was getting frailer, but when she died at home, on December 18th 2015, we were shocked, but grateful for the “how”. She died in her own bed, waiting for a cup of tea that her husband, diagnosed with Alzheimers and 92, was making for her.

In Ireland, we have a tradition of “waking” our dead and I find this tradition comforting, normalising and healing. For my aunt, we sat around with her, in her open coffin, in the house for a few days before her burial. Friends, neighbours and relatives came to see her, we spoke of her and told stories. We patted her head as we walked past, held her hand, and waved incense around her. We talked with her as if she was listening to us. We ate with her nearby, certainly drank to her (she loved a glass of whiskey), my uncle, her children and grandchildren slept in the living room with her, she was not left alone. For my uncle, this was particularly comforting and allowed us all to grieve, talk about and celebrate her together. It was normalising.

What made the process of her death go so smoothly was our advanced planning, although clearly we didn’t plan when she was to die! Several years ago, we planned a writing their “Will” weekend together where all the family spent time, with much food and drink, planning what they wanted, when they died. Did they wish to die at home, what about resuscitation, where did they want to be buried, music, poems, readings, who did what, even who was to get which of their belongings. They dictated what should happen and we wrote it down. Everyone had a say and “their” say was final. As a result of this pre-planning, which was good fun with much laughter, the process of my aunt’s death was smooth and without drama, well apart from a kerfuffle at the church door when as daughters in the family, we carried her coffin into the church and there was a lively discussion about who was shortest and therefore needed to be in front!

Having thought about “Dying Matters”, I have made a commitment to myself to not only write my will, but also to think about my “Advance Planning”, what this would mean for me and how to communicate this with my loved ones. The aim here is to do this early so I don’t have to worry about it in the future and at just 50+, I don’t yet consider myself to be in my old age, despite some system conditions or national definitions!

I’ve been reflecting on how we spend a great deal of time in “birth” planning, we have our birth plans, we have our mid wives sorted out, we choose how and where we will give birth, we check out the birthing centre and we may choose this over a home birth. Midwifery services give us a choice of having a home birth. We avoid having babies in hospital unless it’s absolutely necessary. How often do we avoid dying in hospital? This too surely is a choice? How are health and social services looking at this, how are people informed about their choice and opportunity to jointly plan for this? It is positive that health and social services are planning for this. The Palliative Care Project Board in Powys, chaired by Alan Lawrie, Director for Primary and Community Care within the PTHB, is helping bring this agenda together. Within some local hospitals, there is a plan to create “palliative care suites”, which will offer people more choice.

Birth and death fuel the cycle of life. I find it interesting that we spend a great deal of time anticipating, looking forward to, planning, speaking about, anticipating with joy a birth, but we avoid so often this process in relation to death. Could this be looked at with anticipation, after all it’s the one thing we cannot avoid, it’s going to happen whether we like it or not? Who do I want with me, holding my hand? Where do I want to die? I can’t predict how, but neither can we in a birthing experience, we can only plan and aim for the best experience, exactly as we would wish. What would our “gas and air” be in relation to dying?

In a recent Befriending Network meeting we spoke about the concept of doulas (or midwifery for dying) and having people, perhaps people trained as dying partners or supporters, sitting with people who are dying, supporting family members. Having sat with a great uncle, who was moving in and out of life having turned 92 in recent years, it was an amazing experience to sit and hold his hand for some hours, just being totally present with him.

Everything whittled down to being acutely aware of the senses, of the here and now. What could he see when he sat up suddenly and fixed his gaze at something I couldn’t, what did he mean when he clutched my hand, was he cold or too hot, did my singing soothe him, did he hear me when I spoke with him about how grateful I was for him in my life?

The meaning of “palliative” is to relieve suffering and we tend to equate this with end of life. But surely “palliative care” means offering this at any time in life, not just when we are dying? Alan Lawrie recently said that “health and care services only have one chance to get it right at the end of life”. He goes on to say we need to encourage people to speak more openly and plan for end of life care.

As I was thinking about dying, by coincidence (and in my opinion, there is no such thing), I came across a TED talk by BJ Miller which has profoundly moved me on death and end of life care. It is well worth the 20 minutes to reflect on this man’s heart stirring message.

Dying matters, it brings us closer to a full life experience and to living now. So, how are you planning one of the most important things you’ll ever experience in life, your dying experience? What really matters to you, in life, and equally of importance, in death?

I can’t finish this without quoting Neil Gaiman and Terry Pratchett, heroes of mine, from their book Good Omens. “Don’t think of it as dying, said Death. Just think of it as leaving early to avoid the rush”. Now that truly is anticipation!

Advance Statements for Crisis Planning

by Janet Rogers and Derek Turner

Possibly for the first time in history, the new Mental Health Act Code of Practice (April 2015), for England, has included a section that puts a responsibility on Mental Health Practitioners to encourage ‘patients’ to set out their wishes in advance as ‘statements’ or ‘decisions’. While advance statements are not legally binding professionals are advised that they ‘should make all practical efforts to comply with these preferences and explain to patients why their preferences have not been met.’

Within the Code Advance Decisions relate to medical treatments and should be adhered to by practitioners whenever possible, whereas Advance Statements can be used to cover a wide range of factors that might affect the life of a person who experiences difficulties as a result of their mental health, and how other people, as a result, become involved in the person’s life. This article aims to explore the rational for writing an Advance Statement to assist Practitioners in supporting a person who might experience a mental health crisis at some point in the future. The history of psychiatry has been dominated by Practitioners who have tried to design interventions that can be used to control/manage/support/treat a person whose behaviour is deemed to be ‘insane’. It may seem to some pointless, or at best counter-intuitive, to ask someone who is ‘insane’ to plan their own crises, however with some 30 years or so of learning to listen to, and learning from, people planning their own mental health recovery journey, a realisation is slowly beginning to dawn that this is the only sane way forward. The early pioneers of recovery have not only engineered fulfilling lives for themselves but have given new insights that are now at the forefront of what is considered to be ‘best practice’.

The key to ‘recovery based practice’ for Practitioners is developing a capacity to think differently about ‘how’ to use hard earned skills and expertise. Perversely it has been the drive towards ‘evidence based practice’ that has embedded a culture that suggests that ‘what’ Practitioners do is important. Interestingly it has been the Police who, in becoming increasing dissatisfied with ‘what’ they have been doing, have become open to different ways of working that are more concerned with ‘how’ they engage with the person.

More often than not it is the Police who are the front line service when a person is in crisis. The Mental Health Act gives the Police powers to ‘arrest’ the person and ‘remove’ them to a ‘place of safety’ where they can be assessed by other Practitioners. In the past this has often meant that the person has been bundled into a Police van and transported to a Police Cell. The Triage Pilot, currently being run by Dyfed-Powys Police, has already shown that the numbers of people traumatised by such an experience can be dramatically reduced by engaging with the person and their particular circumstances. The Pilot includes a follow-up visit to each person and it is here that the potential for encouraging people to write and agree their Advance Statements could potentially reduce trauma even further.

Advance Statements can be very simple agreements or more complex arrangements. An example of a very simple statement was told to me recently by a lady who has been prone to panic attacks when out shopping. These are very distressing to her and worry people who are near her. Recently a member of the public called the Police and a female Community Constable arrived. The Constable was not fazed by the situation and encouraged the lady to go with her to a local café. With a cup of tea and a bit of a chat the panic subsided. The lady was then able to tell the Constable that if she had been ‘arrested’ and taken to a Police cell she might not have been able to go out shopping again for many months as she would be fearful that this might happen again. They agreed together that a note would be put on her file saying that going to a café and having a cup of tea and a chat was the best way to deal with a situation like this if it happened again in the future. In telling this story the lady was able to say that she now felt more confident going out shopping knowing that, if she had a panic attack and the Police were called, she would be treated in the same way by any Police Constable.

Another situation involved a woman who had had many ‘arrests’ by the Police, some were very traumatic and others were less so. In talking things over with an advocate this woman was very clear why some Police Officers found her very difficult to manage while others treated her as a member of the community who needed some support to get through the current crisis. In trying to manage her distress she needed to move around and she would be aware that her fists were clenched. Police Officers who did not know her often interpreted this behaviour as aggressive while those who knew her allowed her space to work things through. Police Officers were often at a loss to know what to do with her as her thoughts made no sense to them at all. As a consequence she frequently found herself bundled into a van and transported for anything up to 2 hours in order to be assessed by other mental health Practitioners. The woman understood why the Police behaved this way but she was keen to write an Advance Statement that, if agreed, might mean that she could manage the crisis with the help and support of the Police and other important people. She knew that the person who would have the most calming effect on her behaviour was her husband. He was prepared and willing to be contacted by the Police and to come at short notice. She had this agreement with her husband already and so she needed the Police to agree to make the phone call when required. She also recognised that she sometimes needed a ‘place of safety’ but travelling long distances was very difficult for her and her family. She needed a separate agreement with her local Community Mental Health Team if she was to be able to use one of their rooms to fulfil this purpose.

It can be seen from this example how a range of other factors might need to be considered. Each of these may require separate agreements with the people involved if the Advanced Statement is to have the desired outcome.

Even with the full support of the Code of Practice the introduction of Advance Statements is likely to be slow. There are several reasons for this:

• Trust is probably the biggest factor for most people. Survival in the mental health system has, for many people, been closely linked to keeping Practitioners in the dark about the reality of their mental health systems.
• There is a more general scepticism in society about voluntarily sharing personal information with the Police.
• Another survival strategy that many people use is denial: “It won’t happen again.”
• There are currently no support systems in place to help people to make an Advanced Statement.

Developing a culture where people retain control and responsibility for their mental health, even at times of crisis, will take time, experience and evidence. Investment is needed, whether this is investment of time to encourage people who have had a good experience to embed this in future practice, or financial investment in advocacy services, there is now an opportunity, with the backing of the Code of Practice, to build a future where trust is rewarded, where the Police can work cooperatively, where crisis becomes the trigger for ‘recovery’, and where support is common practice.

Janet Rogers is a trustee at the mental health charity Ponthafren Association, and has previously written for this blog on Volunteering whilst getting benefits and Mental Health 1983: Code of Practice - the review (in England). 

Derek Turner worked for the PAVO mental health team for many years. He is now retired, and runs The Thomas Shop in Penybont with his wife Liz.