The Natural Death Centre has drawn up the following provisional Declaration of Rights of the Person Dying at Home. The attainment of many of these rights lies in the Utopian future, and would require a fairly drastic redirection of NHS resources and a reanimation of Neighbourhood Care type schemes in both urban and rural areas. The statements that follow are thus more in the realm of wishes than enforceable rights; and are limited by how much a family can cope with, since so much of the caring depends on the family at present. Your suggested improvements to this Declaration would be welcomed. It could be made into a more personal declaration by crossing out bits that do not apply to you or by adding others.
- I have the right not to die alone; although with the right to be left alone, if desired.
- I have the right to expect the local priest or other community leader to ask the neighbourhood to support me and those caring for me.
- I have the right to have 'midwives for the dying' or their equivalent to attend to my physical, emotional and spiritual needs.
- I have the right to the same expertise of pain relief as I would obtain if occupying a hospital or hospice bed.
- I have the right not to be taken without my consent to hospital as my condition deteriorates, or, if a hospital operation is required to relieve pain, I have the right to be brought home again afterwards.
- I have the right to have any Living Will I have signed respected and, if not fully conscious myself, to have the wishes of my appointed proxy respected.
- I have the right to reject heart stimulants, blood transfusions or other medical interventions to prolong my life.
- I have the right, to the extent that I so wish, to be told the truth about my condition and about the purposes of, alternatives to, and consequences of, any proposed treatments.
- I have the right to fast as death approaches, if I so desire, without being subjected to forced feeding in any form.
- I have the right to discuss my death and dying, my funeral or any other related matters openly with those caring for me.
- I have the right to as conscious and dignified a death as possible in the circumstances.
- I have the right, if I so express the wish and if the circumstances allow, for my body to remain undisturbed at home after death for a period, and for my funeral to be handled by my relatives and friends, if they so desire, without intervention by undertakers.
All comments please to The Natural Death Centre, 20 Heber Road, London NW2 6AA (tel 081 208 2853; fax 081 452 6434).
- Children need less exposure to violent death on television and in the media and yet they need to be more involved in the natural dying of their relatives and friends; to have the opportunity to view the body if they wish and to participate in the funeral. Teachers in schools can help where appropriate by introducing relevant literature to do with bereavement or, for instance, by helping the children to make Memory Books or Memory Boxes that compile their thoughts and memories and photos of the dead or dying person.
- A number of people learn first aid, which they may or may not ever need to use. But everybody would benefit from learning the basics about preparing for dying and about looking after the dying person, if only to be better prepared for their own death. A one day (or weekend) first-aid-style course in practical care for the dying should be popularised, and open to the general public, not just to the nursing profession.
- Death needs to become less 'socially invisible'. Towards this end, it will help to have an annual English Day of the Dead, along the lines of the Mexican Day of the Dead, both as an opportunity for rituals in remembrance of friends and relatives who have died, with a flavour of festival to it, and also as a chance for debate, discussions and exhibitions related to death and dying. The Natural Death Centre intends to help popularise English Days of the Dead on the third Sunday in April each year.
- The natural death movement must be as insistent as the natural birth movement in pressing for changes in the NHS. First, there needs to be a feasibility study leading to a pilot project that would look at the relative costs for a particular region if the policy were to become one of enabling the terminally ill to die at home rather than in hospital or elsewhere; and the study would encourage and collect suggestions from carers about how services for the dying could be improved. Second, the Marie Curie, Macmillan and other nursing and hospice home-care services need to be adapted, or new organisations founded, for extending services to people dying of other causes besides cancer, motor neurone disease and AIDS. Third, there needs in the long term to be a new 'holistic' profession of 'Midwives for the Dying', trained to look after the physical, emotional and spiritual needs of the dying and their carers; backed up by a network of volunteer 'Personal Assistants' for the dying, who will sit with the dying, carry out errands for the carers, provide transport, etc. Fourth, we need the Canadian experimental 'brokerage' scheme whereby invalids or terminal patients and their carers identify their own financial and other needs, interviewing and selecting would-be helpers, with generous funding coming from the state. Fifth, respite breaks for carers should be frequently and flexibly available, preferably by a vast extension of the Crossroads-type arrangements whereby a replacement carer comes into the home and takes over all the tasks involved.
- There are many Neighbourhood Watch anti-crime schemes that have provided the foundations for neighbours to get to know each other. There need to be grants for pilot projects to extend these into Neighbourhood Care schemes where neighbours would gradually begin to care for each other in crisis, including helping the dying, their carers, and the bereaved. It would be natural in many areas for the local doctor, priest or other respected figurehead to provide the impetus to get such schemes going. For example, Harriet Copperman writes in 'Dying at Home' of an instance where the vicar 'organised a rota of people to sit with a patient who lived alone, in order that he could die at home'.
- There needs to be an English Book of the Dead (there are already several American ones) that would translate Tibetan insights into the experience of dying and the reports from those who have had Near-Death Experiences into anglicised and even Christian rituals that could become part of a pre-arranged Dying Service for those wanting it - for instance an elaboration of the 'go towards the light' message whispered into the ear of the dying person, along with breathing and other meditations; and perhaps accompanied by music such as that offered by the Chalice of Repose at a hospice in the United States. People could be encouraged to design their own Dying Plans specifying the kind of material of this nature that they might like.
- People seem to appreciate dying close to nature, as near outdoors as the elements will allow. Nature needs to be brought into the house or even the hospital - not only flowers, but branches, trees and animals.
- A hospital palliative care ward should have as much a 'home from home' atmosphere and design as possible - imagine, for instance, a country house hospital with open fires and meals around long tables, with patients' interests accommodated, whether for pets, music or complementary treatments.
- Dr Marie Louise Grennert's excellent palliative care work at the Malmo Geriatric and Rehabilitation Clinic in Sweden (tel 010 46 40 33 10 00) deserves copying. To encourage patients to talk freely, she has an informal discussion with each one at the outset and asks: 'What are your most pressing problems right now? What do you want from the care provided here? What is your outlook on the future? Where do you get your strength or inner resources from? How do you feel about entering this palliative care ward?' Next-of-kin also talk with the doctor about anything that is on their mind, not just medical matters - and are invited back to the hospital two weeks after the death for a further talk. Two hours or so after the death, all the ward staff gather briefly to discuss the patient who has died, any problems that arose and any lessons that can be learnt.
- In the hospital setting, the partner needs acceptance as part of the caring team (that is, if both partner and patient would like this). Ideally, just as a parent can sometimes stay with a child in hospital, the partner should be able to share a bed with the dying person, as is possible at home, or to have another bed alongside.
- The medical carers need to maintain reassuring physical contact with the dying. One American hospital renowned for its excellent palliative care was filmed looking after a dying woman who was rigged up to the most high tech equipment. She died with the medical team in full attendance and with an accurate record kept of the exact time of her death. But nobody held her hand or had anything to do with her as a person or even said a word of blessing over her dead body.
- Where it suits their particular style, doctors and nurses in hospital could evolve a brief religious or humanist ritual (depending on their own belief systems and that of the patient) to say together over the body of someone who has just died.
- The nursing staff could show carers and visitors simple techniques such as scalp massage and Boerstler's breath relaxation method (see p. 111) which can be helpful to the dying person and which give family and friends a feeling of involvement.
- How to support the dying person and a knowledge of NDEs and of the various kinds of basic information in this Handbook should become an integral and important part of the training of doctors and nurses. (Project 2000 nurses should not be able to use their 'supernumary status' to 'opt out' of this subject in their training.) Medical staff need encouragement to recognise the difference between healing and curing, and to acknowledge that sometimes death is not a failure on their part. All Accident and Emergency department staff should be trained in dealing with the bereaved, and each such unit should have a counsellor on call (as suggested in the Nursing Times, Jan. 8th 1992). Counselling help, discussions groups, talks by experts and other support must be available to all personnel caring for the dying (as suggested by Pam Williams, see the booklist).
- Doctors should use tests such as the Ether test and the Icard test that are completely reliable indicators of death, for the reassurance of those worried about people being embalmed, buried or cremated alive.
- Some hospitals incinerate miscarried foetuses with the hospital waste. A better approach is that of the Aberdeen Maternity Hospital where since 1985 a service is held at the local crematorium every three months attended by the hospital and those families and friends who wish to come. The main point it that parents should have some choice about what happens to the body - and about viewing the body.
- Permission needs to be granted for the resumption of research into the use of the psychoactive and empathogen drugs with the terminally ill - drugs that in the right setting apparently not only relieve pain, depression, tension and anxiety, but help the patient gain a perspective on their situation. Mescaline, LSD, ketamine and MDMA have all produced promising results in these areas. Readers are referred particularly to the Bethesda Hospital work with terminally ill cancer patients written up by Dr Stanislav Grof in 'The Human Encounter with Death', where 71% of their patients rated an improvement in their emotional condition after participation in the experiment.
- Whilst mindful of the exceptions - for instance, Mother Teresa with her great zest for life, who had a heart pacemaker fitted at the age of 82 - and whilst accepting that the patient's own wishes come first, we believe it would be helpful in some cases if doctors were to take very evidently frail and elderly patients and their carers through a detailed series of questions aimed at ascertaining that person's perceived quality of life, before pressurising a patient to accept a major operation and the subsequent stresses and strains of 'maximum recovery' treatment.
- When dealing with the very elderly and the dying, cardiopulmonary resuscitation given by emergency teams should be reserved for those patients who want it, or whose relatives request it on their behalf, or who stand a good chance of surviving and being discharged (currently about 6% of those patients to whom it is given). This routine assault on the very elderly and dying should be something a patient has to be 'opted in' for, rather than 'opted out' from as at present. (See 'Whose Life Is It Anyway?' by nurse Pam Williams, an unpublished paper in The Natural Death Centre library.)
- The legal standing of Living Wills should be confirmed by an act of parliament, if only to give more secure legal protection to any medical carer who follows a patient's requests.
- All patients should be offered the opportunity of drawing up a Living Will before entering hospital for serious treatment. Indeed, GPs should discuss a Living Will with all their patients who reach pension age, and should encourage them to lodge a copy of their Living Will at the surgery, and to carry on their persons a summary credit-card-size Living Will card, giving the doctor's phone number. The US government in 1987 concluded that Living Wills could save its health service $5 billion a year ('one out of every seven health care dollars are spent on the last six months of life'). Here then is a reform that would not only save the NHS money but that would improve the quality of living and dying.
The word 'euthanasia' comes from the Greek for 'good death' and in the Shorter Oxford English Dictionary has the definition of 'a quiet and easy death or the means of procuring this or the action of inducing this'. With such a definition it seems hard to imagine who could be against it - even to enter a hospice could count as slow euthanasia. It may reassure relatives of those who have committed suicide to know that our culture's present stand against suicide and euthanasia has not been shared at other times and in other cultures. For Christians (as The Compassionate Friends outline in a paper on suicide) it stems from a decision of the church Council of Braga in AD 562 to refuse funeral rites to all suicides. This in turn came about because early Christians were killing themselves in worrying numbers - martyrs had all their transgressions wiped out and were glorified by the church, and Christian suicide was very prevalent and acceptable in the fifth century. The Christians had inherited the Roman attitude to suicide. They saw it as a virtuous act if undertaken with dignity, just as the Greek stoics before them viewed death and suicide with equanimity. Plato too felt that if life became 'immoderate' through disease, then suicide was a justified and reasonable act.
The arguments in favour of doctor-assisted active euthanasia include the following: that a small percentage of terminal pain cannot be controlled by drugs; that some patients are either insufficiently mobile or conscious to take their own lives unassisted; and that the drugs required for a swift and painless exit are unobtainable without a prescription.
The arguments against include: that pain relief as practised in hospices is a very advanced art; that it is against the Hippocratic Oath for a doctor to kill a patient; that it is not for the doctor to play God and to decide that a patient's time is up; that the soul may have lessons to learn from the body's helplessness, dependency and suffering - the 'labour pains' of dying; and, most powerfully, that it is a slippery slope - once mercy killing is legalised, where will it end?
The Inuits and the Japanese used to practise euthanasia by hypothermia - the elderly person passed out in the freezing cold and died within hours. In nature, some animals who realise their time has come refuse all food, just as, traditionally, American Indians who had decided that 'now is a good time to die' thereafter refused all food. The slowness of this kind of dying seems to be the crux of the matter. Rather than a possibly impulsive decision regretted in the event - as suggested, for instance, by the positive and almost mystical transformations experienced by those few who survived suicide jumps from Golden Gate Bridge - fasting to death requires commitment and perseverance.
In its early stages, fasting can sometimes have an almost mystical effect, helping people to feel centered and spiritual. If they then change their mind when viewing their condition from this new perspective, they can simply start accepting food again. Death by fasting has been described in this book as a 'gentle way to die' (in the case of Caroline Walker) and as being 'like a leaf falling from a tree' (in the case of Scott Nearing). Da Free John (in 'Easy Death') has talked of it as 'a kind of traditional yoga for conscious death; people who traditionally died in this way were philosophically disposed toward intuitive transcendence and gradual transition'. It can be a slow, orderly and graceful process that allows the person time to come to terms with his or her dying. (Derek Humphry, however, warns in his book 'Final Exit - The Practicalities of Self-Deliverance and Assisted Suicide for the Dying' - on public sale in the UK or $16-95 from the Hemlock Society, PO Box 11830, Eugene, Oregon 97440, USA, tel 0101 503 342 5748 - that self-starvation can sometimes lead to severe indigestion, muscle weakness, mental incapacity and painful dehydration. Among the self-administered methods he recommends instead are 4.5 grams of secobarbital in combination with brallobarbital, mixed with alcohol and pudding, taken on an empty stomach, followed by a plastic bag secured by rubber band over the head. Hardly a slow, conscious or dignified death.) As a way of dying, fasting is tough on the relatives, watching the patient become more and more skeletal. But perhaps the fact that it is hard on the relatives is an additional safeguard against pressure on the elderly person from potential beneficiaries from the estate. Fasting is also a way that absolves doctors or nurses from ethically problematic involvement, as long as the terminally ill person makes clear his or her rejection of enforced feeding, preferably through filling in a Living Will.
Our tentative conclusions, therefore, are:
- Euthanasia actively assisted by doctor or relative should remain illegal, but judges should be given more scope for leniency in their sentencing, should such cases come to court (as recommended by the Lord Nathan's select committee on murder and life imprisonment in 1989).
- The Natural Death Centre would like to see research into alternatives to active euthanasia, such as better relief of pain, anxiety and depression in terminal care. Our guess is that the breakthrough will come through the use of drugs that enhance the circulation of the neurotransmitter 5-HT.
- Given that our investigations show that none of the mainstream coffin manufacturers will sell a coffin directly to a member of the public and that funeral directors do not see themselves as 'coffin shops' - if they grudgingly sell just a coffin they tend to add an extravagant mark-up - The Natural Death Centre recommends that the Office of Fair Trading issue a requirement that funeral suppliers and directors sell coffins to the general public without undue profit.
- Just as members of the National Association of Funeral Directors (NAFD) have to offer a basic funeral as one of their options - although only 10 out of 18 in one small study informed the member of the public of this option - so they should also be obliged to offer a basic container for those not wanting a coffin. This could be, as in the United States, either an unfinished wood box or a cardboard, pressboard or other rigid container (supported by a plank of wood if necessary).
- Given that 97% of people are 'hooked' the moment they contact an undertaker, and do not shop around, The Natural Death Centre recommends the adoption of regulations similar to the 1984 funeral rules of American Federal Trade Commission, whereby funeral directors are obliged:
(a) to give a price breakdown over the phone (several of the funeral directors in our survey refused to do so).
(b) to give a written and itemised breakdown of prices, to be displayed on the premises and to be readily available for visitors to take away. In the 'Which?' survey of February 1992, a third of funeral directors did not have proper price lists and in a Tyne Tees TV investigation only two out of 18 displayed prices. The Consumer Affairs Ministry at the Department of Trade and Industry has been in endless debate with the NAFD in an attempt to persuade the latter 'to require members to itemise the costs of the components of the various funeral packages offered in estimates and price information'. We are not confident that by the time this book is published these efforts will have been crowned with success. Of the replies to our questionnaire to 2,800 funeral directors, only one - congratulations to George Brooke of Dewsbury in West Yorkshire - sent us a fully itemised price list (the normal undertaker's price list hides many of the funeral costs behind an inflated price for the coffin). The NAFD should find out from George Brooke what a proper list entails, and then publicise this to their members.
(c) to give an itemised estimate before the funeral, so that you can add or subtract items to get what you want.
(d) to charge a fee for embalming only if authorised by the family or required by law - eg for transport out of the country.
(e) to disclose in writing what service fee, if any, is being added by the funeral director to the cost of disbursements, or if he or she is getting a refund, discount or rebate from the disbursement supplier.
- There should also be an enforcement of the requirement that funeral directors reveal clearly on their paperwork and premises if they are part of a larger firm. (The latter, unlike most chains in other businesses, have pushed up prices, and they will tend to bring about a bland uniformity of style.) One small firm complained in the Funeral Service Journal that 'certain multinationals openly admit they do not display ownership on the premises or paperwork, which is against trading law. Even those that do, go under a pseudonym to fool the public.'
- The Ministry of Agriculture, Fisheries and Food (MAFF) should alter its proposed requirement that those buried at sea must have an undertaker's name, phone number and case number on a narrow plastic band around the waist. This requirement would militate against those not using undertakers. It should be enough for the band to carry the name, telephone number and case number of any registrar of deaths or any solicitor.
- The government should take up Jonathan Porritt's suggestion (reported in the D-i-y chapter) that Memorial Groves (where a tree is planted by the body) should be included in its planned Community Forests.
- The Social Security, the Births and Deaths Registrar, the Citizens Advice Bureau and many crematoria make useful printed information available to the public about what happens after a death. This information should include the fact that it is possible to organise a funeral without using undertakers and how to go about it - or at least should include a reference to The Natural Death Centre.
- The Funeral Service Journal carries fairly regular reprints of news items about funeral directors found guilty of crime or fraud. Whilst we are against the registration of funeral directors - it would tend to leave trade associations such as the National Association of Funeral Directors (NAFD) with a near-monopoly of power - the rules on pre-paid funeral plans need tightening. For instance, a funeral director with an unspent record for any crime involving fraud should not be able to take cash from the public for pre-paid funeral plans.
- The National Association of Funeral Directors needs to improve its self-policing and in particular its complaints procedure. All complaints should be acknowledged within ten days and dealt with within three months. The Natural Death Centre complained to the NAFD about a funeral director who claimed on TV that, Oh yes, she would sell coffins to members of the public, when in reality she wanted to charge £300 for the cheapest coffin that she was prepared to sell on its own. We had just been told by another funeral director that he obtained his cheapest coffin for £20, with the handles, lining and name plate adding perhaps another £10. Our complaint was that this mark-up of up to 1000% was an offence against Section 2 of their Association's own code, the principle that undertakers will at all times 'make fair charges in respect of merchandise supplied'. Despite faxing this complaint and a reminder, it took about five months to receive a very lame reply to the effect that the funeral directors have overheads and that they have to polish the coffin, put on the fittings and store it.
- The NAFD should insist that its members familiarise themselves with its code and obey it - not only as regards price lists (Rule 8: 'Every member will have readily available to the general public a price list') but also as regards the basic funeral they are obliged to offer. Rule 15 states that 'Appropriate reductions should be allowed for services in the basic funeral not required, and these reductions reflected in the bill.' Six funeral directors in our survey who claim NAFD membership, and who are no doubt admirable in other ways, refuse such reductions, even, for instance, if a family were to provide its own bearers.
- Members of the public do not shop around in the trauma of bereavement. We recommend in this book that they get a friend who is less involved do so on their behalf, to find a funeral director that suits their particular requirements. But it would also be of assistance to the public if there were regularly published comparative surveys of price and services, drawn up on a regional basis, naming particular establishments. This book is a first step towards such a goal.
- Many people have written to The Natural Death Centre wanting what amounts to a 'disposal service' for their body after death. All local authorities should make agreements with undertakers to supply a cut-rate basic funeral to residents. As an experiment, some might want to go further and offer a 'disposal service', with a simple body container and no hearse, for those members of the public who want this. One correspondent has taken the idea to an extreme and writes that he feels strongly that any such disposal service should not charge 'more than £25 for 60 kilos of rubbish'. This does not fit with the Natural Death Centre's view of the mystery and dignity of death - and of the importance of the rite of physical farewell to a person's body - but we accept that for some people a disposal service is all that they want.
- Local authorities, church authorities or the government should offer financial incentives to churchyards to re-open their graveyards. At the moment it can be to a church's financial advantage to declare a graveyard closed, and to pass its maintenance over to the local authority. Churches should adopt the Belgian practice, outlined by Tony Walter in 'Funerals and How to Improve Them', whereby a ten-year grave is bought. If a further ten years is not then paid for, a notice is pinned to the grave, giving one year's grace before the grave is made available for re-use. In this way, local burials remain possible and graves are well tended.
- New crematoria should adopt Tony Walter's design proposals for 'theatre in the round' with the coffin stage centre (see The Good Funeral Guide chapter for more on this).
- UK crematoria, as in the United States, should offer a cheap 'alternative container' for those not requiring a standard coffin. In most instances this is a cardboard coffin costing from $15 to $50. Funeral directors feel that they are losing business by selling just coffins. The crematoria should not feel this constraint to the same extent, although they may fear that undertakers will take their clients elsewhere.
- Only one doctor should have to sign for cremation, as recommended by the Brodrick Committee in 1971. In many cases at present the second doctor neither examines the body nor positively identifies it, yet a second £30 fee is charged.
- There are many commercial opportunities that entrepreneurs could seize on within the UK funeral trade, particularly as the Green movement's sixties generation ages and becomes responsible for organising the funerals of parents and friends. The first undertakers to offer an entirely Green funeral would do rather well - one option could consist, for example, of a horse drawn cart (or wheel bier for short distances), the body in a coffin of recycled newspaper or similar, followed by burial in a wildlife reserve cemetery. Another option would be to offer a posh rentable coffin for display plus a cheap combustible inner coffin.
- Likewise, the d-i-y superstores could offer flatpack coffins. Sainsbury's Homebase wrote to Jane Spottiswoode to say that they would not sell coffins as their stores are intended for family shopping 'based on the future and therefore not associated with death', whereas of course death in the future is one certainty that every family faces! Argus wrote to say that the sale of coffins would require a 'truly personal service' - in fact all that is required is the assurance that the coffin is big enough: two or three standard sizes should suffice.
- There is scope too for a Death Supermarket like Roc'Eclerc (and Fun'Eclerc) in Paris which now has over forty branches in France as a whole. They sell urns, wreaths, headstones and other funeral objects. Their prices would need cutting, however, for the UK - their coffins start at the high price of 1,995 francs (£238). Roc'Eclerc was started by Michel Leclerc, who specialises in undercutting monopolies. (Their Paris address is 85 Avenue General de Gaulle, Creteil-L'échat, L'échat, Val de Mar 94, France, tel 010 331 4980 4865 or 4207 7513; fax 010 331 4980 4866 or 4742 7321). Having already moved into Belgium and Switzerland, they have tentative plans to expand to the UK.
- The rules about the styles of memorial permitted in churchyards, cemeteries and crematoria should be relaxed, with any design or type of stone allowed. The disliked Albert Memorial monstrosities of one era become the much-loved tourist attractions of the future. And as one vicar complained in the journal Funerals: 'I can't tell you how often I deal with clients who are deeply upset because they have set their heart on some appropriate memorial which has then been forbidden.'
- Birthdays are recognised social occasions. Deathdays could be recognised too. On the first anniversary of the death, it could become the accepted practice for there to be a meal for close friends and relatives, and at subsequent deathdays just the simple gesture at mealtime of a toast to the person's memory or those present telling a story or memory about the one whose anniversary it is - thus passing on family lore to the next generations.
This may be the appropriate moment to wish you, dear reader, a peaceful deathday. May death for you be as graceful as Walt Whitman imagined it could be:
Come, lovely and soothing Death,
Undulate round the world, serenely arriving, arriving,
In the day, in the night, to all, to each,
Sooner or later, delicate death.
From 'Leaves of Grass' by Walt Whitman.
[Main Page]
[Prev]
[Contents]
[Next]
Converted to HTML by Merlyn Albery