Dying Matters Coalition

Token picture of old chap looking serene and knowing and, in all probability, totally unaware that his picture has been hijacked by the Dying Matters Coalition to advertise its campaign. I take that back unreservedly.

We got our "Membership Certificate" in the post today, a token of our having signed up with the National Council for Palliative Care's campaign to 'promote public awareness and debate on issues of death dying and bereavement' earlier this year. Four Trust supporters went to the first annual members' Forum on 13 May this year. I think we sent more delegates than any other of the 100 organisations who were in on the launch of the "Dying Matters" coalition, as it is now called. The organiser even told me off for sending so many, but do I care?

As I've tried to point out in recent months and years, there's a big push in place from Government to improve End-of-Life Care, and especially to respect the wishes of the big majority of people who would prefer to die at home than otherwise, given the option, and being assured of a reasonable level of care at home to make dying comfortable, dignified, pain-free and with the dying person "in charge". In other words, with the sort of care one would normally expect to get in a hospice, but bearing in mind that less than 5% of dying people actually get hospice care, most of them children with life-limiting illnesses or (a few) terminal cancer patients.

It's impossible not to be cynical about Government motives for wanting people to 'choose' to die at home: it's obviously a lot cheaper than dying in a hospice, and it saves blocking a hospital bed that might be needed for someone on a waiting list. Die-at-home is clearly a bean-counter's dream. But there's also good evidence that people do want to die at home, given the provisos mentioned. Nonetheless, the "Dying Matters - Let's Talk About it" campaign needs to be seen in that light, as a marketing device to raise awareness of the "options" available, and - possibly - to nudge people towards a cheaper end-of-life solution than currently exists.

As a Buddhist I've no quarrel with any strategy that brings the inevitability of death into sharper focus, especially if that focus embraces the way we live our lives while we've still got lives to live, and encourages us to live them more fully. That's the moment-by-moment challenge facing each of us, and the essence of the Buddhist way, it seems to me.

I'm rather sceptical, though, about this preoccupation with the "Good Death" - it's a concern that has too high a salience with many western Buddhists. Surely if we can get living right, and have more day-to-day concern for the Good Life - not the fantasy Good Life of big houses, expensive cars and endless youth courtesy of the plastic surgeon's scalpel - the good death follows on naturally? Or did I miss something in the Buddha's teachings?

The next step? The "Dying Matters" campaign proposes three things we can do as an 'organisation' to help raise public awareness and build a strong "cross-sector coalition". Here they are:

1. Tell other organisations you work closely with the Dying Matters Coalition and encourage them to join too. If you want to join as an individual (remember, you will get a Certificate!), go to http://www.dyingmatters.org/ or phone Freephone 08000 21 44 66

2. Support the Dying Matters National Awareness Week (15th-21st March 2010) and plan an activity or event to raise awareness.

3. Let the Coalition know what you are currently doing to raise awareness of death, dying and bereavement and share your examples of good practice with the Coalition.

If you've any ideas about how to do these things, let us know.

As for myself, well, I put myself about on behalf of the Trust by 'blogging', by going out to give talks to Buddhist groups here and there, by putting in time at meetings or conferences, by occasionally running workshops like the one I offered recently at the Mind-Spirit conference in Chelmsford Cathedral, and by writing articles and letters (not all of them get published, but some do). And I try to keep myself "in shape" as best I can as a Buddhist practitioner, though my practice is as idiosyncratic and unruly as I bet yours is. If I offend you, I apologise (fingers crossed).

Holistic Health - The Spiritual Dimension

I picked this leaflet up recently during a hospital chaplaincy visit to St Tiggywinkle's, and I thought it was worth tossing in to the discussions some of us in the 'Buddhist community' are having about the Buddhist chaplaincy role: what chaplains do, how to measure the outcomes, how to benchmark the performance specifications, and all the other important aspects of the developing work.

I thought this was remarkably cogent and fitted in very well with the modern approach to health-care and spirituality being promoted within the NHS.

St TIGGYWINKLE'S NHS UNIVERSITY FOUNDATION TRUST HOSPITALS

DEPARTMENT OF MEANING, PURPOSE AND HOPE (formerly SPIRITUAL AND PASTORAL CARE formerly "Hospital Chaplaincy")

NOTICE TO PATIENTS

The procedure you will undergo is designed to explore meaning, purpose and hope, and our technicians are specially trained and experienced in it. These guidelines will help you to cooperate in the procedure and get the most benefit from it.

When in the cubicle, please remove any scepticism you are wearing and leave it in the tray under the couch. IMPORTANT: If you are carrying any scientific materialism please deposit it in the red bucket in the corner and replace the lid firmly.

Lie on the couch and make yourself comfortable and credulous. A technician will be with you soon.

The procedure isn't painful, but some patients experience a warm 'connected' feeling, and there may be a little discomfort during the installation of new meaning. This usually passes off quickly.

When the exploration is complete you may have a slightly renewed purpose, so it is all right to have a cup of tea and a light meal (not provided) in the Tiggywinkle Terrace Restaurant and BrunchBar.

Further explorations may be needed. If so, the technician will advise you, and make a further appointment.

We welcome your feedback, comments and suggestions. There is a form for this purpose on the way out. You don't need to give your name, but to help us provide a culturally and socially equitable service we do request that you answer the questions on gender, age, ethnicity, sexual preferences and whether you have read Professor Dawkin's book, "The God Delusion". All of it? Really?

Please remember to collect your scepticism etc before you leave the cubicle. St Tiggywinkle's accepts no responsibility for any loss or damage to your incredulity as a result of this exploration.

The procedure could also affect your hoping mechanisms: you may notice hoping that we have a nice day; so thank you, and the same to you. See you later!

Open wide.....

Another long gap between posts, but someone wrote recently to comment on my last one, and that jolted me out of my (sort of) stupor, and prompted me to blog again. Something else prompted me: I've had a dental abscess for about a month, treated reluctantly by my GP ("That's a job for your dentist"), but it didn't get better so I visited my local dentist this morning to see what he thought about it.

The dental practice has been rebranded, so it's now called the Smile Centre, with smiling designer-clad young women and a new waiting room with plasma TV. Somewhat nervously, I asked to see the price list. I had about £100 in my pocket, having just picked up my reirement pension at the Post Office. I suspected the bill might be more than I was carrying, and my bank account is bare. Some of the treatments on the "Smile" part of the menu were startling, running into four figures...

Emergency treatment £85, planned extraction £50. These items seemed like the clinical equivalent of starters on a restaurant menu, prawn cocktail or something spread on tiny squares of toast. I feared treating my septic upper jaw would cost the equivalent of lobster thermidor or something stuffed with truffles, but the dentist took pity on me when I asked him to tell me if I could afford treatment, and I got away with paying him £65.

I had to have two goes at getting numbed-up, because infection interferes with the take-up of local anaesthetic (he said), and his first attempt at removing my miserable molar stump was pretty painful. At the second attempt, and after drilling, pulling and pushing, the bad tooth yielded in three sulky pieces.

I identified quite strongly with that tooth. It had inhabited the cavern of my mouth for, I estimate, about 68 years, and had crunched through a mountain of comestibles over nearly seven decades. I can understand its reluctance to give way to sudden tugs and hostile wrenches from a stranger, and I wonder if I shall show as much reluctance and obstinacy when the time comes for me to give up my hold on life? Shall I, like the molar, cling hopelessly on? Well, I admit, until now, I've preferred to think of myself as - if not a shining example of good grace at the end - at least not as a frightful, fearful, curmudgeon, snarling and/or pleading for a bit longer.

This rather new owning up to not being ready for death is welcome and timely. I have built up an enormous repertoire of vain opinions and over-valued ideas over the years, including well-aired ideas on death, and only very rarely have I been challenged about them by people who know me. There have been a few honourable exceptions, people who have called a spade a bloody hypocrite. You know who you are and I salute you with belated thanks. First for having the guts to tell me what I needed to hear, and second for not writing me off as a totally lost cause.

Don't misunderstand me, I'm not about to throw all my opinions overboard, not quite, and not just yet. But something has dawned on me, a new state of mind provisionally labelled "maybe you don't know as much as you thought you did"; I feel a bit lighter and free-er, less tethered to certainty, and in the end it didn't hurt much, and it didn't cost more than I could afford.

Bardo

Bardo, gap, interval, hiatus - call it what one will, it's been a long one since I last wrote anything on this blog. During the interval I've asked myself many times if I should return to it, and found no convincing answer. Lots of questions about who it's for and what it's for and who's writing it. No clear answers, unless the interval itself supplies one, and the fact that I've resumed.

The image opposite is Bardo, 2001 with grateful acknowledgement to Jeff Irwin Photography 2008

I've written elsewhere about the tentative but (to me) unmistakable impetus that is gathering in the affairs of the Trust. I spoke with Stephen Hendry today and we corresponded by email about the spirit of renewal that is abroad, and which he has instigated with the support and encouragement of Willemien and Lisa Sheehy, two relatively new and relatively young Trust supporters, with my own support (and my own direct involvement), and without dissent from other Trustees.

Stephen and I are meeting on 27th February for a 'brain-storming' meeting, and we hope Lisa will be able to join us. When Stephen proposed this meeting I told him laughingly that I felt I needed a strong wind to blow through my mind. I intended this as a light-hearted comment, but even as I thought about it more, Stephen had himself picked up on the analogy and responded in an email, "Let's be guided by the wind. I like that. The wind allegedly saved the Japanese from invasion by the Koreans. The Great Wind, Dai-Kami. Great to be guided by the wind".

I found myself suddenly very moved by his words. Tears pricked at my eyes. Moved to respect for whatever wisdom, perhaps unwittingly, had been expressed in the words we had chosen, or had been open to; about the project we, but mainly the "Young Ones", are tentatively and hopefully embarking on. A project I am very, very unlikely to see fulfilled. Yet a project that fills me, unaccountably, with hope. We call it (for the sake of a title) Conscious Living, Conscious Dying or CLCD for short. It is, perhaps, a 're-branding' of the concept of Hospice in the Heart; yet it is pregnant with renewal and, I think, a kind of enlightenment. And of enlightenment it is wisely said that it is never what we conceive of, reach after, or expect. How could it be so?

This afternoon we received a message from a trainee GP in East Anglia, "glad to have found us!" - how marvellous. She sent an enthusiastic offer of tacit support and encouragement. Amongst other things she comments on the strictures imposed on medical people by the General Medical Council, the doctors' regulatory and disciplinary body, about spiritual matters. These must be kept strictly boundaried in dealings with patients, so that personal religious beliefs never intrude on or affect the professional relationship (I paraphrase).

I respond that I also think it's important that we act mindfully in our relations with those we serve, so any such rules should be interpreted as a guide to the wise and a law to the foolish. I'm rather sceptical about talk of the 'spiritual dimension' that is creeping in to the language of health-care.

Assumptions about the universal acceptibility of a 'spiritual dimension' to be addressed by care-staff (e.g. through on-admission assessment of "spiritual needs") are bound to end in tears, I think. There are lots on conscientious non-believers in the 'spiritual dimension' out there waiting to feel justifiably aggrieved, and file legitimate complaints. More aggro from NHS 'customers' we don't need! But I know I'm swimming or wading against a strong tide of contrary opinion here, especially amongst chaplains (I am one).

Harold Pinter 1930-2008

HAROLD PINTER CBE CH FRSL (1930-2008)

Two quotes from Harold Pinter who died over the Christmas holiday:

“There are no hard distinctions between what is real and what is unreal, nor between what is true and what is false. A thing is not necessarily either true or false; it can be both true and false” (1958).

A long life-time later:

“When we look into a mirror we think that the image that confronts us is accurate. But move a millimetre and the image changes. We are actually looking at a never-ending range of reflections. But sometimes a writer has to smash the mirror - for it is on the other side of the mirror that the truth stares at us.”

“I believe that despite the enormous odds which exist, unflinching, unswerving intellectual determination, as citizens, to define the real truth of our lives and our societies is a crucial obligation which devolves upon us all. It is in fact mandatory.” (2005, Nobel Prize for Literature Acceptance Speech).

These two sets of statements strike me as inconsistent with each other, unless, of course, one accepts the premise of the first that life is paradox, mystery, impenetrable, un-pin-downable. In which case we can either ignore or accept the implicit condradiction in his words, or do both simultaneously.

An interval of fifty years separates the mind of the young, emergent Pinter and the older, wiser Pinter. Pinter the Elder lays down the Law of Obligation, an inescapable call to duty, to mental struggle, to the obligations of citizenship, concluding, “If such a determination is not embodied in our political vision we have no hope of restoring what is so nearly lost to us - the dignity of man” (Nobel acceptance speech ).

Now I do wonder how he came to this point of pessimistic certainty, this dogmatism. Perhaps he was frightened into it by the thought of how his Nobel acceptance speech might be received, although he had little time for critics, once saying, “I find (them) on the whole a pretty unnecessary bunch of people”.

I don’t share his concerns about human dignity, or think that maintaining human dignity is the province of politics, the responsibility of a political citizenry, or even a social project to be embarked on by writers. Less tinkering, say I- less “building Jerusalem in England’s green and pleasant land”, less chariots of fire and ceaseless strife, if you please. Less doing - more being?

I do like Harold's portrait at the head of this page. So very intense, so very "fifties" - the angry or at least agonised young man of the day, amongst many. He was very handsome too, as well as gifted.

CHAPLAINCY

My contract to serve as an Honorary Hospital Chaplain to Mid-Essex Hospitals NHS Foundation Trust and the Farleigh Hospice has recently been renewed for another year, although I can hardly be said to have discharged it very completely over the last year. There are very few calls on the services of a Buddhist Chaplain in Mid-Essex, and I haven’t “put myself about” very diligently at the Chelmsford hospitals that comprise the Trust, although I’ve responded to the infrequent calls that have been made from time to time.

I’ve also taken occasional Communion with the Christian ministers and volunteers, a very agreeable and uplifting ‘ecumenical’ ceremony held each Wednesday lunchtime.

The Trust already offers meditation classes for staff, so there seems little point in setting up another “stall” for potential meditators, even if I had the time and the skill to run classes, which I don’t.

Work is progressing in Buddhist circles, I’m informed, on developing a structure to accredit and approve Buddhist Hospital Chaplains more widely (there are at present very few of us in post). I have reservations about this move - not that I’m against a Buddhist presence in hospitals, but because it seems unnecessarily restrictive and bureaucratic, and I’m not sure who will come forward to do the approving and accrediting the new scheme calls for.

I wouldn’t feel in any way equipped to approve another person for the role. Who am I to judge another, and what would I be using as a yardstick to measure their acceptability? Some people toss criteria like “trustworthiness”, “empathy”, “reliability”, “warmth”, “well-versed in Buddhadharma” and so on in to the arena. But what do these mean, and how are they properly assessed or quantified?

Others would require an attestation from a “Buddhist spiritual leader or teacher” about the candidate’s “good standing in the Buddhist community”. Well, I don’t know how I would meet that one - I couldn’t, not ever.

But if you are interested in a chaplaincy or chaplaincy volunteer role, write in to me and I will put you in touch with developments, so you can bring your own influence to bear on what is decided, before the die is cast, so to speak.

Positivity - glass half-full or half-empty?

We were recently approached by a seasoned Buddhist who is inspired to build a Buddhist Hospice here in the United Kingdom - a place where a dying Buddhist could be fully supported in their practice as they neared the end of their life, a modern, well-appointed place where holistic care could be given to the highest standards by Buddhist attendants.

This is a noble aspiration, and it was put to us with unusual fervour and enthusiasm, notwithstanding the challenges inherent in such an undertaking. The person who made the proposal didn't know about our own existence when he first conceived the hospice idea, and only learned about the Trust via a third party, which led to his telephoning us.

My first-off response was to greet the proposal, saying that I would personally lend whatever resources I could to such a venture and, further, that the Buddhist Hospice Trust would do whatever lay in its power to help. I thereby surprised myself at my own positivity.

I think my response was called forth by the positivity of my counterpart, the one who made the proposal; but also that it came from a general attitude of positivity that I have cultivated this year, although I can't say how I've done it. I've meditated on positivity a few times, and - of course - positivity (and cooperation) were advertised as themes for the year on the website, and in planning the conferences that didn't happen. One can only wonder - but there it is - a glass half full of readiness to help, open-mindedness, and belief in miracles!

At the Mandala meeting we met up with the man who wants to run with the hospice idea and see it through to fruition, in company with like-minded others as a project to unite all traditions, generating the fund-raising and voluntary-service capacity needed, and within a open time-frame. This fellow's enthusiasm is infectious, and there's no doubting his determination to realise his dream, his ability to entrain others, or his experience of the British Buddhist scene (whatever that might comprise).

We had an interesting discussion. I'm not at all an expert on hospice work, and I did suggest to him that he might better consult people who are about what's involved in developing a hospice service from scratch. My views on hospice work are, it must be said, at least idiosyncratic; but one does not have to be a specialist to know that hospices in general are 'retrenching' financially and in other respects, that end-of-life care is changing, so that it is likely in future that more people will die 'at home' than in a hospital or hospice bed. This doesn't of itself imply that a Buddhist hospice can't be achieved, nor that it oughtn't to be: let what will be announce itself, and who knows what may happen.

What I was able to point to, from my own experience of care-provision (in nursing and residential care environments, as well as in hospitals), is the high cost of care. It is not so much in capital costs that hospice care comes dear, but in recurrent costs - the monthy bills, as the following "back-of-an envelope" calculations may show. These are my own raw figures, and they may only be rough approximations, but - as far as I can honestly say - they are realistic, and give some idea of what might be involved.

The figures offered are based on a notional hospice offering four in-patient beds for terminally ill or dying people requiring end-of-life care, including palliative care (pain- and symptom-relief, specialised nursing, and on-call medical support). The figures represent estimated monthly outlay, based on a twelve calendar month year.

Rates/Council tax £ 200
Utilities (Gas. electricity, water, sewage) £ 800
Insurances £ 120

Maintenance of fabric/repairs £ 100
Technical equipment (hire/replacement) £ 160
Food/drink (based on 4 patients and eight

staff) £ 300

Cleaning materials and consumables (e.g.
paper towels, toilet rolls, gloves etc) £ 160
Stationery/stamps/office sundries £ 80
Telephone/Internet £ 60
Nursing staff (based on 6 Whole-Time
Equivalents [WTE] for 24 hour cover x 7 day week and employer's NI) £7,200
Care Assistants (based on 6 WTE at national

minumum wage including employer's NI) £4200
Administrator/clerk-receptionist/payroll staff 1 WTE £ 900
Housekeeping staff (cleaner/laundrywoman) 1 WTE £ 750
Cook/Kitchen Assistant 0.5 WTE £ 400

Total £15,430

You may agree this is a lot of money to find monthly, and could call for a professional Fund Raiser, probably full-time. Let's say (if we include her necessary expenses and the resources of publicity she would need to do her crucial work) another £1,400 a month. That adds up to a rounded-off total of £200,000 annual recurrent running costs.

Food for thought, but my cup's still half full, and I'm up for further debate and analysis on the matter. Are you?

Networking

My eldest son scorns my occasional use of the word “networking”, and I can see his point. He feels that “to network” has taken on a kind of cynical, manipulative connotation, that of using people for one’s own selfish purposes, of empire-building, ‘feathering one’s nest’, a culture of reciprocal favours and obligations: “you scratch my back and I’ll scratch yours”.

Networking, one imagines, is a vital part of the curriculum of the coveted Masters in Business Administration with which so many of our health and social care managers seem to invest themselves in modern times. But our organisation - and I use the word cautiously - is very loose, and deliberately so. We rely on the self-directed actions of individuals to fulfil our declared purposes. The Trust has only ever been a free association of individual women and men, committed to sharing themselves in spiritual friendship with others at times of difficult transition, and to fitting themselves for such sharing through personal practice.

We don’t select, accredit, authorise, train, direct or supervise our volunteers. We don’t ask for references, testimonies of good Buddhist standing, Criminal Records affidavits, or transcripts of caring experience or qualification. In this sense we are counter-cultural, if only because everything else in contemporary culture seems to be subject to ‘managerialism’, to the entrepreneurial ethos, the ’cutting edge’ of new technology, the rolling tide of added-value, risk-reduction and all the rest.

I read a prospectus recently for training as an End of Life Care Practitioner. The training involves four weekend modules and two eight-day retreats. It’s an impressive-looking programme aimed at impressively qualified and committed individuals, but the cost to each participant is US $5,000, plus US $2,900 for accommodation at the training centre. I can’t and won’t repudiate such initiatives as this, but I deplore any trend towards the ‘commercialisation of compassion’, the insidious commodification of care.

And, right or wrong, my instinct is to trust the open-handed and open-hearted Hospice Trust volunteer to do her best, as she sees it. In my experience, our best is always just what is needed: even our mistakes and clumsiness are as it should be in the wider scheme of things.

Writing about when things go wrong reminds me of an incident that occurred at my brother’s funeral last weekend. The service had just got under way with a short introduction, and the priest invited the congregation of mourners to join him in a short prayer. As he was making this invitation a latecomer, a young woman carrying a child no more than a few months old slipped into the chapel and, making her way down the central aisle, lost her footing on the polished tiles and fell with a great crash and a cry of shock to the floor.

Fortunately, with a mother’s instinct, she managed to hold the baby away from harm’s way on the unforgiving tiles as she fell, but she was clearly very distressed and a great gasp of concern rose up from the seated mourners. She rose to her feet clutching her child, and managed unaided to find a seat on the pews. Without offering a word of comfort or concern, and without leaving the rostrum (but with a look of deep embarrassment), the priest continued at once with his formulaic words “Shall we pray….”

Over his recited prayer the congregation heard the woman quietly weeping as she comforted her baby. We were, and I include myself, as if transfixed by the awful conjunction of events. I still feel the momentary horror of the situation as I write, the awful contradiction of a ceremony that - as it were - averted its eyes from everyday pain towards an unseen God who, we learn, numbers every hair on our head, and every sparrow that falls.

It has occurred to me to wonder if such a scenario could ever be enacted in a Buddhist setting. I don’t know the answer, do you?