Sacred Dying: Creating Rituals for Embracing the End of Life • Life and Death on Your Own Terms

by Megory Anderson; Roseville, California, Prima Publishing, 2001, 364 pages, $23.95 • by L. L. Basta, M.D.; Amherst, New York, Prometheus Books, 2001, 364 pages, $26

Mary Ellen Foti, M.D.

Sharing the commonality of topic and tactic, Sacred Dying and Life and Death on Your Own Terms speak to the multiple complexities of achieving a “good death” (1,2) in today’s reign of medical technology. That Americans have specific preferences about both how and where they want to die has been documented in numerous studies (3,4). However, despite this research, the end of life is all too often a harrowing experience for patient and family alike. Anderson and Basta offer possible remedies for this problem.

Anderson, speaking to anyone dealing with the death of a loved one, states that Sacred Dying “is about bringing spirituality, through ritual, into the physical act of dying.” Basta recommends his work to those “who care deeply about preserving their dignity and sparing loved ones the agony and economic consequences inherent in life-and-death decisions.” Although the authors’ respective locales and perspectives are very different, they both use storytelling as a means of describing dilemmas and pointing out solutions. Both books recognize the critical importance of facing one’s own mortality in order to support and care for a person as they pass.

Anderson is a theologian who honors the experience of dying by using spiritual rituals to help people “leave the body so that the soul can move forward.” Most of the deaths she describes occur either in homes or in situations where technological stopgap measures will not be initiated. Basta, by contrast, is a cardiologist. He describes dying patients in high-tech teaching hospitals who are prodded, poked, and cut to “maintain life”—a life that few would choose.

Basta’s book is as much a reference as a guide. For the medical student or early-career physician, it teaches the principles of autonomy: paternalism, beneficence, and shared decision-making. The author appreciates the pressures to which doctors must respond—from patients, families, administration, or policy—when caring for a patient for whom cure is not achievable. The book’s scenarios depict thorny decisions that patients, families, and physicians might face and outline the ethical principles that can be used to structure responses to questions about the denial or withdrawal of treatment with respirators, feeding tubes, antibiotics, and cardiopulmonary resuscitation. Basta reminds those of us in medicine that the job includes much more than the scientific application of technological innovations. It involves the art of caring for an individual’s dignity by being thoughtful, kind, and present.

Like Basta, Anderson focuses on the protection and preservation of an individual’s dignity at the end of life. Her approach describes the goal of care as a spiritually sustaining process for the dying person. She shows the reader how to calmly approach the dying person to determine what is most important to him or her. The space between the process of death and the event of death is expanded, if not in time, in spirit. Attention to the person’s corporeal and spiritual needs helps transform the experience. Spiritual interventions take many forms: music, aromas, textures, lotions, words, silence, and prayer. Anderson recounts multiple stories that exemplify her methodology.

Sacred Dying and Life and Death on Your Own Terms offer practical tools, though vastly different, in their appendixes and other end matter. Anderson includes works from the scriptures and other sacred texts, poetry, readings, and prayers. The selections represent most of the major religious rites of the world. Her bibliography is replete with sound readings on general death and dying, spiritual concerns, rituals, religious traditions, multicultural traditions, the afterlife, practical concerns, ethical issues, music, and the psychology of death. Basta presents an extensive glossary of medical terminology, an advance care planning template complete with specific end-of-life scenarios, and some 350 references.

Hospital-based medical personnel—physicians, nurses, social workers, medical students, and others—will appreciate the familiar structure and texture of Basta’s work, which resonates with personal experience while clarifying complex ethical issues. Critical care providers will be encouraged by Anderson’s competent description of ways to soothe patients with the ancient balm of spirituality. Therapists of all disciplines who work with patients and families on issues connected with terminal illness will refer frequently to both books and be rewarded.

Because most of us are troubled by the thought of our own passing, we are ill prepared to aid and support a patient or a loved one on their last voyage. Each of these books helps us to calmly appreciate the truth that “to everything there is a season, a time for every purpose under heaven: a time to be born, and a time to die” (Ecclesiastes 3:1-3), and in so doing, we become more able to bear witness to death.

Footnotes

Dr. Foti is assistant professor of psychiatry at the University of Massachusetts Medical School in Worcester.

References

1. Emanuel E, Emanuel L: The promise of a good death. Lancet 351(suppl II):SII21- SII29, 1998
2. Steinhauser KE, Clipp EC, McNeilly M, et al: In search of a good death: observations of patients, families, and providers. Annals of Internal Medicine 132:825-832, 2000[Abstract/Free Full Text]
3. Emanuel LL, Barry MJ, Stoeckle JD, et al: Advance directives for medical care: a case for greater use. New England Journal of Medicine 324:889-895, 1991[Abstract]
4. Fried TR, van Doorn C, O’Leary JR, et al: Older persons’ preferences for site of terminal care. Annals of Internal Medicine 131:109-112, 1999[Abstract/Free Full Text]

A Journey From the Known to the Unknown (from the excellent newly revived about.com/palliative care section)

Refusal of artificial feeding as a natural part of dying

Judith Ahronheim, MD

Adapted extract from an article entitled ‘Artificial feeding: what’s involved?’ by Judith Ahronheim, MD, Associate Professor of Geriatrics and Medicine at Mt. Sinai Medical School, New York City. This article appeared in the Choice in Dying newsletter for Summer 1984. Choice in Dying is an American not-for-profit organisation which issues Advance Directives for each state, and various other publications such as DDying at Home (US$5) which looks at the legal and medical implications for the family of a person preferring to die at home rather than in hospital.

Although potentially valuable and life saving in many situations, artificial nutrition and hydration do not provide comfort care for dying patients. Experience and available scientific evidence have shown that death without artificial nutrition or hydration is natural and pain free. Most dying patients feel little hunger; some stop eating completely and drink less and less. When patients experience severe symptoms, such as pain or nausea, these are due to the disease itself, not the avoidance of food and water. If a patient experiences thirst, it is usually controlled by sips of water, ice chips, or lubricants for the mouth. Patients with brain disease who avoid nutrition and hydration quickly slip into a coma, a sleep-like state that is inherently free of pain.

In contrast, tube feeding prolongs and often worsens the dying process. Terminally ill patients can sometimes benefit temporarily from artificial feeding. But to assume that it must always be provided fails to consider the patients’ needs. Because we ourselves tend to see the provision of food and water as intrinsic to caring, we sometimes feel uncomfortable about withholding artificial nutrition and hydration. When we are entrusted with making decisions for the dying, we need to broaden our understanding of caring so that we address the patient’s ccomfort, not our own.

The possible side effects of tube feeding

Tube feeding differs from ordinary feeding in important ways. Technical skill is required to insert the tube and make decisions about what type of feed is given and how much, but even with skilled care, there can be side effects.

Implantation through the abdominal wall can cause surgical complications and skin infection. Feeding tubes can traumatise and erode the lining of the nasal passage, oesophagus, stomach or intestine. Most patients fed by tube have brain disease and are unable to report that they feel full or unwell, so abdominal bloating, cramps, or diarrhoea may occur. Regurgitation is common, and the feed may be inhaled into the lungs. Confused patients can also become anxious over the tube’s presence and try to pull it out. This can lead to the imposition of mechanical restraints – tying the arms down – which heightens their distress. Intravenous lines can be uncomfortable, especially if fluid leaks into the skin or the skin becomes inflamed or infected. Intravenous fluids must be given with extra care to frail patients in order to avoid fluid overload and serious breathing difficulties.

Choice In Dying, Inc., 200 Varick Street, New York, NY 10014-4810 (tel 212 366 5540; fax 212 366 5337).

Improving care of the dying in residential care homes

People in residential care and nursing homes might well like to talk more about death and dying, according to a study by Katherine Phillips at the Royal Star and Garter Home in Richmond. The residents Phillips interviewed in this home said that they did wish to talk about aspects of death and dying with staff. However, she found that any ‘specific conversation around dying issues rarely happened between residents and staff’. Appropriate training is now planned for the nursing, care and administrative staff.

Katherine Phillips, The Royal Star and Garter Home, Richmond, Surrey TW10 6RR (tel 020 8940 3314; fax 020 8940 1953).

Counsel and Care have prepared the following very useful list of questions that residential care and nursing homes could ask themselves concerning death and dying.

The list features as a chapter of their book Last Rights (available for £6-60 from Counsel and Care – Jef Smith and his colleagues – Twyman House, 16 Bonny Street, London NW1 9PG, tel 020 7 485 1550; fax 020 7 267 6877).

Making preparations

(1) Have the personal wishes of all residents about the last phase of their lives been sensitively explored with them?

(2) Have any specific information or requests been recorded in each resident’s case notes or care plan and made known to all relevant staff?

(3) Is there a record for each resident of who should be contacted when death seems likely?

(4) If residents indicate that they want to talk about the possibility of their dying, are staff able to respond or to call on someone appropriate?

A dying resident

(5) If a resident has to go to hospital, can they feel sure their room will be kept for them with their possessions in place ready for their return?

(6) If rooms are shared, is thought given to whether a dying resident or his or her companion would like to move?

(7) Does the bedroom remain a homely place throughout a terminal illness?

(8) Can a dying resident be assured that they will not be left alone, if that is their wish?

(9) Are the relevant friends, relatives or other sources of support contacted as soon as appropriate?

(10) Are frail or very sick residents helped to get up and visit other parts of the home if they want to?

Relatives

(11) Are relatives given information about a dying loved one in a way which is sensitive and timely?

(12) Can relatives be accommodated overnight so as to be with a dying relative, provided with refreshments and other facilities, and made to feel welcome?

(13) Are family members who feel able to, encouraged to participate in nursing and looking after the personal needs of their dying relative?

(14) Are relatives informed of a death promptly and helped to deal with the immediate emotional and practical issues they face?

(15) Do staff know where to advise relatives to get expert help on bereavement?

(16) Are relatives able to stay in touch with the home and its residents after a death if they wish to?

Other residents

(17) Are residents kept appropriately informed about the health of one of their fellows who is dying?

(18) Are residents who wish to able to visit a dying companion, to make some contribution to their care and themselves to get support with their feelings of sadness or fear?

(19) Is there an agreed and sensitive way of informing residents of a death in the home?

(20) Are facilities, including transport and staff escorts if necessary, available for residents who wish to attend a funeral?

(21) Do residents who are unable to attend the funeral have another opportunity to pay their last respects to a dead colleague?

(22) Is bereavement counselling or similar help available to residents?

(23) Are residents who have died recalled – in conversations, through photos in which they appear, by specific items marked in their memory, or in any other way?

Minority groups

(24) Are the wishes in relation to death of any residents from ethnic or religious minorities sensitively discussed with them, noted and respected?

(25) If a detailed knowledge of minority religious and cultural practice is not present within the staff group, is it known where advice can be sought?

(26) When a resident who has requested something different from a conventional funeral dies, is the situation explained to other residents and appropriate opportunities provided for them to participate in mourning?

Staff

(27) Do young and inexperienced staff have someone working with them who can help them to cope with the first deaths which they experience in the home?

(28) Is training made available to staff in ways which help to develop their skills and to cope with the special stress of dealing with the deaths of residents?

(29) Is bereavement counselling or similar help available to staff?

(30) When a resident is close to death is information passed to members of staff who are off-duty who would like to be kept informed?

(31) Are administrative, catering and domestic staff given the opportunity to relate to dying residents if they wish to?

(32) Are all relevant staff given time, and helped with transport if necessary, to attend residents’ funerals?

Outside help

(33) Are the priests, ministers or religious friends of residents encouraged to visit if a dying resident wants to see them?

(34) Does the home have links with a hospice in the area?

(35) Is maximum use made of community health services on behalf of terminally ill residents?

(36) Are the neighbours, friends and relatives of a dying resident made welcome?

A Good Death – A guide for patients and carers facing terminal illness at home by Dr Elizabeth Lee, published by Rosendale Press (10 Greycoat Place, London SW1P 1SB, tel 020 7 222 8866), 1995, 188 pages, £8-99 (£1 extra for p&p), ISBN 1 872803 16 4. Review by Nicholas Albery.

This is a truly excellent book that not only patients and carers should read but also doctors, nurses and social workers. In summary, on The Natural Death Centre’s booklist, it scores 8 out of 10 overall (no book scores higher) and 4 out of 10 for how academic it is, 5 out of 10 for how spiritual and 8 out of 10 for how practical.

It has many tips that go beyond common sense. Here are a few of them:

# ‘How long have I got [till I die]?’ This is the question that everyone asks and no one answers. The unwritten code of practice among doctors is to reply, ‘I would love to give you an answer but the truth is that no one knows’. … If you need an answer to this question, you should encourage them to throw caution to the wind and make a best guess. Those that stubbornly refuse to can often be pinned down by your asking ‘If it was your mother who was ill like this, how long would you guess?’

# Explain to the professionals caring for you that you would like your selected professional to be your ‘key worker’ – whether GP, district nurse, social worker or home care specialist nurse.

# If you don’t get on with your doctor and find her unsympathetic, try not to say that you find her difficult, rather say something like ‘Although I appreciate all you are doing, I find that I am very comfortable with Doctor X, and hoped he might be able to visit me more often’.

# You may have a long list of questions for your GP. It may help to write them down before you see her.

# If you want more information about the quality of care a hospital provides to patients who are dying, you could ask some of the following questions: Does the hospital have a private interview room? What about overnight accommodation for relatives? Do terminally ill patients have the use of special beds – Pegasus beds for example? Have any nurses on the staff completed their ENB 931 continuing care course which gives them special training in the care of terminally ill patients?

# When trying to choose a care home, you could ask the same questions as you would for a hospital (above). Add a simple question like ‘Do sick residents have special food prepared or do they share the same menu as everyone else?’ The answer may tell you a lot.

# How can one diplomatically keep away unwanted visitors? Restrictions are easier to impose if they are sanctioned by the doctor or nurse: ‘I’m sorry but the doctor has said no visitors after eight o’clock,’ or ‘Nurse insists he must lie quietly after his midday medication and not be disturbed for two hours.’

# One alarming thing after death, if you are not expecting it, is that sometimes there is a slight gurgling or sighing noise of air escaping from the throat or a sudden shifting of a limb as muscles relax.

Dr Elizabeth Lee fully supports The Natural Death Centre’s view that, with adequate support, most patients would choose to die at home. As she writes in a letter to the Centre:

‘I recently talked to my community nurses about the death of one of their patients at home. She was an elderly widow, very strong minded and cantankerous, so much so in fact that neither her family or neighbours offered any practical support for her at home. She took her own discharge from hospital against medical advice and came home to die alone. In spite of her isolation she was able to achieve the death she wanted. She received a tremendous amount of support from her home help, community nurses, GP and night nurses. She was cared for very well at home and had one-to-one attention for many hours a day. She died peacefully one morning when the community nurse was with her. Although I have not added up the hours that she was alone I am sure it was considerably less than the patients in hospital. Perhaps she knew that by going home to die she would be less isolated and alone than those who die surrounded by professionals in hospital.’

Dr Lee has sensible criticisms of the present system:

# Specialist palliative care services are ‘diseasist’. If you are one of the majority of patients dying of something other than cancer you probably will not have access to a specialist nurse.

# The absence of a comprehensive night sitting service is a woeful inadequacy in the care provided to the chronic sick and terminally ill in Britain.

# There are not enough home care assistants.

# In many hospital palliative care beds, couples are not allowed to sleep together or even lie in each other’s arms. A woman who pulled the curtains around her dying husband’s bed and hopped in to cuddle and hold him, was ‘discovered’ and chastised by a nurse, who implied that this was definitely unacceptable behaviour.

# Doctors and nurses often avert their eyes and hurry past the bed of someone who is dying. Children in a cancer war were once asked to rank the staff in order of importance to them. The sister, house doctor, registrar and consultant came last. Top of the list was the ward cleaner, followed by the student nurse and the junior staff nurse.

# Deaths in hospital are denied. Ward curtains are drawn around every bed so that no patient is disturbed by seeing the dead body moved away. Compare this to a death in a small hospital in Kenya. The patient’s mother stood and raising one arm above her head began to sing a hymn. All the other young women on the ward stood by their beds in their pink hospital nightdresses, faces turned to the dead woman and singing with her mother. They faced her death and they bid her goodbye.

Patients need to be allowed to acknowledge the death of fellow patients and to say goodbye in some way.

# Dr Lee even puts out a call to socially inventive designers. There needs to be, she says, the female equivalent of a male urinal bottle, which can be used lying down.

The Natural Death Centre has many books in its library on care of the dying. This book, however, would be one of my recommended best buys. The other top-scoring books, in my no-doubt biased view, are: The Natural Death Handbook which has more details on aspects such as Living Wills, financial preparation for dying, family-organised funerals and Near-Death Experiences), Coming Home by Deborah Duda (American and more spiritual than Dr Lee’s book), Green Burial by John Bradfield, Grace and Grit by Ken Wilber (about the death of his wife from cancer) and Who Dies? by Stephen Levine (on the theme of conscious living and dying).

# Dr Elizabeth Lee, 26 Goldney Road, Clifton, Bristol BS8 4RB.

# For the Natural Death Centre’s booklist please send an SAE to 6 Blackstock Mews, Blackstock Road, London N4 2BT (tel 0871 288 2098; fax 020 7354 3831; e-mail: rhino@dial.pipex.com). Or order direct from the book order page.

A Death Plan
taken from The Natural Death Centre

About a third of us in the UK get around to making a Will, which specifies our wishes for what should happen after our death, as regards our funeral and our children and our possessions. A tiny percentage make an Advance Directive or Living Will (available with a Death Plan, and an Advance Funeral Wishes form from The Natural Death Centre for £7 per set; order securely online by credit card) stating how much medical intervention we want when dying. But hardly anyone makes a death plan, similar to a birth plan, saying what they would ideally like in terms of atmosphere and environment as they lie dying. Of course no one can be sure how they will die or whether such a plan in the event will be of any relevance, and they may change their minds when the time comes; but nevertheless, a death plan may help friends and relatives to know one’s orientation and wishes.

In the hope of encouraging readers to improve on the following list, or to send in their sample filled-in versions of this list, or to write a list of their own, here is a first attempt at a death plan. [Separate sheets can be used for longer responses, using the numbers below to refer your reponses back to. Underline or tick or cross out or amplify as relevant. This form can be photocopied.]

(1) If my condition is terminal I would like to be told the full details / plus implications of treatment and non-treatment / a summary / not to be told at all / other [specify].

(2) If possible, I would / would not like the doctor to tell me a guess as to how much time I might have left, between best and worst cases, and on average.

(3) I imagine I would / would not like every effort to be made to find alternative medicine and approaches / latest medical breakthroughs that might give me a miraculous last-minute remission.

(4) I have / have not made an Advance Directive, specifying how much high tech medical intervention I wish for when dying and whether or not I wish to be force fed [if yes, the location of this AD].

(5) I imagine that I will / will not choose to fast as death approaches.

(6) If possible, when I am dying I would like to be cared for at ……………………………… [location, whether hospital, hospice, at home, indoors, outdoors, etc].

(7) I would like to be surrounded by ……………………………… [flowers, nature, photos, mementoes, etc].

(8) My next of kin is [name, address, phone number].

(9) If I go into hospital / when I die, what I would like to happen to my pets is …………………………….. .

(10) I would / would not like for close relatives / friends / everyone to be told that I am terminally ill.

(11) Those friends or relatives who I would most like to be involved in my nursing care are ……………………………… .

(12) I would like ……………………………… to be able to sleep in the same room / bed as me.

(13) I may change my mind, but I imagine I would / would not like visitors when near the end. The ones I would particularly like to visit me include ……………………………… [give addresses and phone numbers if necessary].

(14) I would / would not like to be left as alone as possible when dying.

(15) I imagine that I would / would not like to discuss the fact that I am dying with these visitors, and would / would not like to make explicit the possibility that these are final goodbyes.

(16) My religion / spiritual practice / philosophy is mainly ……………………………… and therefore for my dying I would like ……………………………… .

(17) Depending on my medical condition and feelings at the time, the kind of ministrations I might appreciate when dying include:

(18) Music. My favourite pieces would be ………………………………. [state specific music or broad range].

(19) Live singing, chanting, hymns, psalms, particular prayers or texts, etc [as specific as desired].

(20) Physical contact [eg hand held].

(21) Massage.

(22) Aromatherapy [or other such approaches].

(23) The person(s) I would most like to be there at the moment of my death is / are ……………………………… .

(24) I would like to be as conscious / unconscious as possible as I die, and would like pain control treated accordingly. The drugs I imagine I might appreciate include ……………………………… [specific or class of drugs].

(25) For the moment of my death I would / would not like all life support machinery and monitors disconnected from my body.

Signed by:

Name

Signature

Date

This signing is witnessed by the two undersigned, neither of whom stand to benefit from the signatory’s Will:

Name of first witness

Signature

Witness’s occupation and address

Name of second witness

Signature

Witness’s occupation and address