Caregiver Revolution

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

Facing Death and Finding Hope – A Guide to the Emotional and Spiritual Care of the Dying
Review of Presentation by Christine Longaker at the NHO National Conference, Dallas, November, 1998 by Paul Barry

Christine Longaker, author of Facing Death and Finding Hope – A Guide to the Emotional and Spiritual Care of the Dying, was among the presenters at the NHO Symposium in Dallas, Texas in November 1998. Ms Longaker, a long time associate of Sogyal Rinpoche, author of The Tibetan Book of Living and Dying, addressed the personal qualities that caregivers can nurture to bring to bedside of the dying, and the pertinence of the approach to living and dying emerging from Tibetan Buddhist thought.

Ms. Longaker opened the session with an exercise. She asked the audience to just sit quietly and use the image of a shaken glass of muddy water to represent the usual state of our mind, and to imagine that by sitting quietly we could allow another aspect of mind, the natural clarity, to emerge. She asked that the audience members allow their minds to slowly settle as they sat. She ended this opening exercise with the suggestion that such an exercise allows a person to be a little more present. She emphasized the importance of the quality of presence that caregivers bring to their care for the dying.

Ms. Longaker then spoke of her entry into a spiritual path. She spoke of the death of her husband 20 years ago of leukemia, and how her experience with his death moved her toward an involvement with issues related to end of life care. She spoke of her involvement in a hospice program and her introduction to Sogyal Rinpoche. She spoke of her continuing involvement with Sogyal Rinpoche, Rigpa (Sogyal Rinpoche’s network of training centers), and the Spiritual Care Education and Training Program, with which her role is Senior Educator. She spoke of putting into daily practice, from whatever spiritual tradition a person follows, an experience that supports the ability to more present in moments of caring for the dying.

Ms Longaker noted that such daily practices also provide care for the caregiver, creating an atmosphere of greater peace, and the ability to be more present. Ms. Longaker spoke of personal qualities that contribute to care for the dying. She noted genuineness, confidence, and presence.

In speaking about the quality of presence Ms. Longaker addressed the dual aspect of presence. She spoke of our habitual way of being outwardly active but internally absent. The counter to this was seek internally, and act from, a deep clear awareness. She said that recognizing the dying person as a whole person could enhance this quality of deep presence. She spoke of seeing the dying person as more than their suffering. She used the image of mist on a mirror to describe a patient’s suffering. The suffering was not always there. The patient has an essence: intact, whole, infinite, unborn and undying. She described a point of view of death as a transition, that essence continues past this transition. She addressed the possibility that care can support the infinite part of person.

Ms Longaker spoke of genuineness from the point of view of recognizing that there was not a huge difference between the caregiver and dying person. She suggested that caregivers be open to letting the dying give their final lessons about life. She used the image of little boats on a river moving toward a waterfall – the moment of death. She pointed out that no one could be certain when that moment would come for him or her.

In referring to some ideas described in her book she spoke of four tasks of living and dying. She described death as a very active time of life. The four tasks she described as follows: 1. understanding and transforming suffering; 2. making a connection, healing relationships, and letting go; 3. preparing spiritually for death; and, 4. finding meaning in life. She indicated that her main focus in her talk was to address the third task of spiritually preparing for death and assisting patients in this task. She noted that in attending to this task with clients causes us to look at our own death, our fears and how we are applying ourselves to the task of living and dying.

Points that Ms. Longaker made were often accompanied by a story. She said that she used stories rather than overheads. Several points that she made included quotations and references to Sogyal Rinpohe’s work. One quotation, she indicated, summed up a great deal related to the spiritual practices around dying. She repeated several times: “At the moment of death, there are two things that count: Whatever we have done in our lives, and what state of mind we are in at that moment.”

Ms Longaker made a significant point using details from descriptions of Near Death Experiences (NDE’s). She described the sense of expansion, peace and joy that characterize many NDE’s. She described death as a great opportunity to recognize a connection to the infinite. She also offered the view that a risk is present that a person in death may “smuggle across” all theirs fears, attachments, troubles, etc., which would make any after death experience a continuation of the suffering present in the current life. She spoke of a choice that individuals make in how they live and the many moments of transition in everyday life in which a person may choose to continue the habits and suffering that they experience in life. She noted the many “little deaths” that we experience on the way to the “big death” at the end of life. She spoke of the moment of first waking in the morning, a time of presence and awareness, before all the thoughts and concerns about life flood back in to awareness. She spoke of the possibility that we habitually regenerate our suffering every day, and that there is a choice to do other than that through a daily spiritual practice.

Ms. Longaker shared a number of stories to elaborate her points. She told a story about what she described as the practice of the continuous prayer of the heart. A woman took on the practice in her dying of saying, “Lord Jesus Christ have mercy on me.” Ms. Longaker described how this practice transformed the woman’s process of dying. She spoke of the importance of facilitating a dying client’s effort to find meaning in their life and death. She spoke of the importance of compassion. She told a story of concentration camp victims in W.W.II dedicating their suffering to the wish for the well being of others whom they loved.

Ms. Longaker referred to Elizabeth Kubler-Ross’s work. She spoke of a Reverend Mwalimu Imara and the notion of three commitments for a meaningful life. She described the three commitments as follows: To become aware of and accept ourselves; to invest ourselves in authentic dialogue with others; and, to decide on a positive direction of growth.

Ms. Longaker offered a description of a spiritual practice from the Tibetan Buddhist tradition. She spoke of Phowa: Traditional Phowa and Essential Phowa. She described the process of Essential Phowa. The reader may be interested to know that this practice as described is on pages 124-5 of Ms. Longaker’s book. Ms. Longaker’s book is available through Main Street Books, Doubleday, New York (on the web at http://www.bdd.com). The Spiritual Care Education and Training Program is at 499 Powell Street, Suite 200, San Francisco, CA, 94102-95103 (also on the web at http://www.atlantech.net/rigpa/spcarenw.htm). There is a link to an interview with Ms. Longaker on the Rigpa site at http://www.microtec.net/~inerson/ondeath/longaker.html.

Death and Eastern Thought, Frederick H. Holck editor
Abingdon Press, NY 1974

I came upon this book at the local library and half heartedly picked it up for a quick look as it seem rather dated. I was pleasantly surprised. It is a thorough and well written introduction to the topic especially in regard to Hinduism. It also covers Buddhism (giving a history of Buddha’s life and how his teachings developed), Jainism, and the Chinese and Japanese traditions. Each chapter is written by a different expert and the forward is an excellent discussion which compares eastern and western ontological concepts. The next three chapters deal with the Vedic period, later Hindu traditions and the orthodox (Hindu) teachings. Next the heterodox teachings are covered, ie Buddhism and Jainism.
Three modern Hindu thinkers are then presented; Tagore, Gandhi and Radhakrishnan. The book ends with short presentations of Chinese Taoism and Japanese pre-Buddhist traditions.
As you can see, well over half of the book is dedicated to some form of Hinduism and it really is a good introduction to this complex ancient religion. The forward and the chapter on modern Hindu thought are especially noteworthy, they bring one much closer to an understanding of the great Vedic philosophical concepts which have taken centuries to develop and which are still unfolding.