CONTINUING THE PHILOSOPHY OF REGINALD O. KAPP

9.47 BETTER PLANNED AND MANAGED DEATHS AT HOME


Paper for NHS End of Life Commissioners
By John Kapp
22, Saxon Rd, Hove BN3 4LE, East Sussex,     johnkapp@btinternet.com

Patient representative from 2004-8 on the Bereavement and Loss committee of Brighton and Sussex University Hospitals Trust (BSUHT) and member for Sussex on the National Association of LINk Members (NALM).

Author’s experience   The ideas in this paper are based on being able to ‘plan and manage’ the ‘good’ death of my wife Janet (1937-2000) so that she did not suffer futile interventions, and was able to die at home in peace with those whom she wanted to be present. Looking back, we had several pre-death meetings with each other, our daughters, her GP and holistic consultant. These were crucial in the subsequent management of her death and my grieving. Afterwards we all knew that we had done our best for her, so had no complaints against anybody.

26th March 2010


Contents
1 Abstract
2 The problem: the NHS doesn’t do death very well
3 Avoiding futile interventions
4 My story: Janet’s last months, death and funeral
5 Our story: diagnosis of dying triggers a pre-death meeting
6 Grieving and actions required after the patient has died
7 What can we do about it? Give staff copies of the following leaflet to be given to terminal patients and their carers.
Appendix 1 Leaflet to plan a good death
Appendix 2 . Proforma living will / Lasting Power of Attorney (Personal and Welfare)
Appendix 3 ‘Caring for the terminally ill at home’

1 Abstract
A welcome new target of the NHS is to plan and manage end of life care better. This requires clinicians to change their attitude to death from a ‘failure’, to an inevitablity at some point in time. Healthcare staff should engage with terminally ill patients and their carers and family to plan their death with a ‘death plan’, in the same way that they plan their treatment with a ‘care plan’. Then futile interventions will not be given, and death will not come as a surprise. To help healthcare staff raise and discuss this emotional subject with terminally ill patients, a draft leaflet promoting the issues needed in a death plan and living will is appended.

2 Summary of the problem: the NHS doesn’t do death very well
a) Death should not be a surprise
Up to half the complaints received by hospitals concern badly managed end of life care. Typically this was because there was no death plan. After ‘heroic’ interventions which turned out to be futile, death came as a surprise. Futile interventions are not just futile; they have the following dis-benefits, which make them worse than useless:

i)   They gave the patient, relatives and friends a false hope of recovery.
ii)   They caused more suffering than benefit, - days of life without quality of life.
iii)   They distracted everyone from the acceptance of the inevitable, and the making of a good death plan.
iv)   They did not give best value to the taxpayer, as 80% of the average life-time health budget is spent on end of life care in our 2 years, which is a misallocation of scarce resources.

Death should not be a surprise to NHS clinicians because the NHS has modern technology which can monitor and keep a body alive indefinitely. Their excuse for not warning patients of their impending death is therefore not ignorance, but their erroneously training and false belief that death is a failure. They therefore go to ridiculous lengths to prolong life at any cost. They should learn from an American president who famously said that the only two certainties in life are death and taxes.

To give patients and carers a better ‘end of life care’ experience, healthcare staff should warn them in good time that ‘the end is nigh’, and facilitate a ‘pre death meeting’. This should incorporate ideas from the Liverpool Care Pathway (LCP) for the dying, and suggestions from a published letter entitled ‘Caring for the terminally ill at home’. (see appendix 3) If the patient is in hospital, they should be discharged home to die, or to the home of a willing relative or friend.

We acknowledge that healthcare staff cannot just march up to a terminally ill patient and say: ‘We know that you are going to die soon, but you can’t die here, so tomorrow we are going to send you home to die.’ These emotionally loaded ideas should be promoted more gently in a leaflet that healthcare staff can hand out to terminally ill patients, their carers, and relatives, with words such as: ‘This may be a bit premature, but when you are ready, would you like to consider the ideas in this leaflet?’ Appendix 1 is a first draft of such a leaflet, which should be piloted in a hospital ward and GP surgery to test how it is received, whether it works to reduce the numbers dying in hospital (known as ‘bedblocking’ (1) or more euphemistically ‘delayed discharges’) and amended accordingly.

The complainants about end of life care were angry because they were taken by surprise. They felt guilty that they were unable to do more for their loved ones, and it is now too late. To avoid this, the NHS have to work with the carer in planning appropriate (not futile) interventions, and to make the arrangements for the patient to die at home, (or in the home of a relative or friend) These can be drawn up in ‘pre-death meetings’ whose objective is to create ‘good death plans’.

b) Avoiding futile interventions
To be kept alive artificially on ventilators, intravenous feeding etc is possible today, but this is not likely to be the wish of either the terminally ill patient or their family and friends. The default position that healthcare staff automatically assume is that everybody wants their life to be saved, and their body kept alive for as long as possible, irrespective of their quality of life. The truth is that (deep down) many people are quite happy to die, and even wish for it, as proved by the number of suicides and those addicted to drugs which kill slowly.

In this erroneous belief, doctors will do heroic interventions to officiously keep us alive at any cost unless our medical notes show clearly that we do not consent to having them done to us. A legal document stating these ‘non-consent’ instructions is known as a living will. Since the Mental Capacity Act 2007 a living will is now known in legal jargon as a ‘Lasting Power of Attorney (Personal Welfare)’ Note that this is not the sort of power of attorney to sign cheques, which is known as ‘Lasting Power of Attorney (Property and Affairs)’

These documents are provided by solicitors, and are expensive (perhaps around £150) which many patients cannot afford. The NHS should provide the forms free to terminally ill patients, and put them prominently in the medical notes. The form should state clearly the interventions that we do not wish to have, such as hospitalisation if we have a crisis, resuscitation if we lose consciousness, antibiotics if we get an infection, tube or intravenous feeding if we cannot eat by mouth. A draft proforma living will is given in appendix 2.
Patient representatives are taught to make: ‘my story’ become ‘our story’ become ‘what should we do about it. I follow that structure in the rest of this paper.

4 My story: Janet’s last 4 months, death and funeral
I had read that colon cancer usually lead to secondaries in the liver, which manifests with jaundice. About 4 months before her death, I saw the telltale browning of the skin, and a frightened look in her eyes and knew in my bones that this was it. However, it was another month before an ultrasound scan of her liver confirmed it in the look in the radiologists face, and the urgency in his voice: ‘go and see your GP immediately.’ The GP sent her to the consultant surgeon’s outpatient clinic, who gave the terminal diagnosis admirably succinctly: ‘Mrs Kapp, you’re going to die. We can’t tell you when, but we promise you a pain-free death.’

I had the help and telephone support from my relatives, particularly my sister and cousin, and Janet’s cousin’s wife who are all doctors. I also learned much from the 2- day introductory course at the Bristol Cancer Help Centre, to which I took her. Janet refused chemotherapy (5 FU) but had had regular holistic help from the vicar, a caring lady from the church, reiki healing, counselling and aromatherapy massage, all of which helped her gradually to heal her tensions and let go of her body.

For the first 3 of those 4 months my mind was in denial that she was going to die, despite the clarity of all the doctors, and the above mentioned knowing in my being). This was manifested by my mind ‘believing’ (ie persuading itself) that she would have a spontaneous remission or miracle cure. Around a month before her death this denial suddenly lifted, and I came to terms with losing her. I realised that if I stuck to that obviously false belief it would not help her or me.

However, I was still worried about whether I could cope with her dying at home. I had schoolboy fears of pain (ie that I would not be able to bear seeing her suffering) and dead bodies (ie that there was something spooky about them, so they must be removed as soon as possible)

About 2 weeks before her death (day –14) I suddenly had an empowering revelation that managing her death would be the greatest adventure of my life, and that I could cope with whatever happened. It would be my last act of love for her, to repay the countless acts of love she had given me in 37 years of marriage. However, I still didn’t know how, and I was worried about that.

On day –10, I tentatively asked her where she wanted to die. She angrily shouted at me: ‘If you want me to die, talk about my death’, so I dropped the subject, but an hour later she said quietly: ‘at home’. I realised that my question had broken the ice. I said: ‘Who do you want to be there with you?’ She said: ’You and our three daughters’ (who live in London) I said: ‘Then you’ll have to tell me when to call them’, to which she agreed. This acknowledgement of her impending death prepared the ground for the pre-death meeting, which was not all at once, but spread over several days...

On day –7, she was very swollen with oedema in her legs and abdomen, so I took her to the local hospice to see whether it could be drained (it couldn’t). I tried to draw the doctor aside to ask whether and how I could cope with her death at home. The question was brushed aside with embarrassed body language and the instructions to try some new diuretic, and come back in 2 weeks. This surprised me as I thought that she could die any day.

I also tried to ask the same question of the palliative care nurse, and the district nurses who came daily, but always got the same frightened and evasive response. Nobody seemed to be able to face the fact that she was going to die, or give me encouragement to cope. They bypassed the subject by implying that whatever intervention they were doing would make her better (ie ‘straws in the wind’ that give false hope of a cure, to avoid addressing the question). I knew they were kidding, (and so, deep down, did they) but their deceit and inability to accept the inevitable made me feel frustrated and unsupported in my greatest hour of need.

On day –5, I went into a high street undertaker’s shop, and asked the same question of the receptionist (who had been a nurse). She said quietly: ‘Its quite simple. Unplug the telephone, put on her favourite music, and hold her hand until she stops breathing.’ With hindsight that answer looks ridiculously simple, but it gave me the empowerment (ie the permission) that I needed to go on with confidence. She gave me the undertaker’s number to ring, and said that there was no hurry to do so because we could keep her body at home as long as we liked.

On day –4, our eldest daughter came, and we cheerfully planned her funeral, with hymns, readings, etc. On day –3, she said ‘I can’t hang on much longer’. The vicar (who had been chaplain to a hospice) came and put in her mind the three words to ponder: ‘forgiveness, regrets and goodbyes’ She told me to summon her brother and cousin and they came on day –2, and she had a happy meeting, saying goodbye to them without tears. That evening the pain broke through the dimorph, and I called our private GP, (Dr Milind Jani) who prescribed a syringe driver. A nurse came and fitted it, but she failed to explain how Janet could give herself a boost when she needed it. On the morning of day -1 she said to me, ‘Get the girls’ who came and stayed. Between us, we kept a vigil of 2 hour watches by her bed that night.

On day 0, at 7pm, the holistic doctor (Patrick Kingsley) from Leicestershire (who she had been seeing about monthly) rang to ask after her, and I said the end was near. He told me to tell her: ‘Let go and never mind about the rest of us’. I gave her his message, and a blissful smile of relaxation appeared on her face, and she sank back on the bed and said: ‘thank you’. Her greatest concern had been whether I could manage without her. She also did not want to let the doctor down by dying. His message, relayed by me meant that we both gave her permission to die.

The pain broke through around 9pm, and we called out Dr Jani, who gave her a boost to soothe her nervous system (We could probably have avoided this if the nurse had explained how she could have done this for herself). We all sat round her armchair, quietly holding her hand, and she stopped breathing about an hour later. After she had gone we had a long joint hug, which gave me great comfort from family solidarity and support.

This ‘near death experience’ was the most moving event of my life, and one which I would not have missed for anything. It showed me that there was nothing frightening about death. My girls were concerned that I could sleep in our double bed, beside Janet in the chair, but there was no other spare bed in the house. I slept there quite well, not even noticing when about 4 hours after her death, the baby and my daughter woke in the next room to the sound of a wind blowing through the room as her spirit left her body.

Next day (+1) I found myself frequently popping into the bedroom to stroke her hair and say goodbye again. I noticed my daughters doing the same. The doctor came to give me the death certificate, and he let me keep talking for an hour, which was a relief to me. Janet’s brother and the vicar came to talk to us to prepare his funeral address. The undertakers eventually arrived at about 6pm with warnings about smells, (it was 15.5.00, and it was warm weather) so we reluctantly let them take her body away. We needed its presence for that 20 hours for the knowing experience to sink into our bones and beings that she had really gone out of our lives, and that we were not dreaming.

Planning the funeral and informing family and friends so that they could attend was therapeutic, and got the family working as a team. We planned a wake party at the house, and ordered food for 60, but about 90 people came. The guests stayed until the evening, and the whole day was a lovely celebration of Janet’s life. Looking back, I felt that my grieving had got off to a good start, and was halfway through by the funeral. I would like to go like that, and help others to do so likewise. I would generalise the key issues in a hospital setting as follows:

5 Our story: diagnosis of dying triggers a pre-death meeting
a) Diagnosing death
To manage a good death, it must not be a surprise to the relatives, so recognition of this moment is crucial. In the Liverpool Care Pathway (LCP) dying is clinically diagnosed within a few days, when any two of the following four criteria is met: ‘The patient is bed-bound, is only able to take sips of fluid, is semi-comatose, or is no longer able to take tablets.’ These are the most basic signs, but there are others, such as death rattle breathing, and from about day –3, the dying can no longer see the tip of their nose, as the eye muscles gradually contract to make the eyes turn upwards. This increases so that soon after death only the whites can be seen. This is why pennies were put on the eyelids to close them, so that the body would look natural on display in an open coffin.

Dying can also be diagnosed by the patient, who will ‘know’ it in their bones. Janet did this on day -3, with the remark: ‘I can’t go on much longer’, and the summoning of her brother and cousin. However, if the impending death has not been mentioned, the patient may not share this knowledge. They may be in denial that they are dying. They may be keeping up a pretence that they are not dying to protect their family or friends, who they think could not take this news. Nevertheless, discerning relatives and friends, and the nursing staff will detect the change in their energy, and should broach the subject for everybody’s sake. It is better to ask: ‘Do you think that you (they) are dying?’ and be proved wrong, than to hold your tongue, and have them saying angrily after the death: ‘why didn’t someone tell us how serious it was?’

The pre-death meeting should be called:

i)   when the patient wants it (as Janet did)
ii)   if the patient is in denial, it is accepted common knowledge that the patient is dying among the carer, family, friends or the healthcare staff.
iii)   when dying is diagnosed by the LCP criteria mentioned above

From that moment, all interventions except pain relieving analgesics should be stopped, as they are futile, and perpetuate the deception mentioned above. Other relatives, friends and relevant health practitioners should be informed by telephone that the patient is dying, and invited to come to the pre-death meeting which should be held as soon as possible, within a few days. The meeting should be held around the bed of the patient, even if they are unconscious, so that everyone may feel the energy of the situation.

b) Agenda for the pre-death meeting
The main questions to be addressed should be where the patient should die and with whom. The option of hospital should be ruled out from the start. GPs, paramedics, relatives and friends have been dumping the dying on hospitals for decades, and that is why we have the problem of most deaths being in the wrong place (hospital) with so many complaints about deaths that went badly. Hospitals are not set up for dying in, so if the patient dies in hospital they block beds and increase waiting times for patients who recover, see paper: ‘Reducing the number of patients dying in hospital (bedblocking)’ (1)

If the carer and others at the pre-death meeting say that they want the patient to die in hospital, it should be explained to them why this is not an option. The post death process will have to be rushed, because for the sake of other patients and staff the body will have to be rapidly removed to the morgue. Because of infection control, they will probably not even be able to view it. Instead of the peace and quiet around the body that the relatives should have to adjust to their loss, they are bound to feel hassled. If they want their loved one to have a good death, with themselves in control of the situation before and afterwards, they will have to facilitate the patient being discharged to a quieter place. This is ideally the patient’s home. If not, the home of a relative or friend. As a last resort, a hospice, if one can be found which will take them. Most hospices now offer a ‘hospice at home’ facility, which is greatly preferable. The following possibilities exist, and should be discussed as appropriate:

If the patient lives alone, they should be asked whether they also want to die alone. If this is their wish, it should be respected and implemented, without any projection of what anyone else thinks. Death is not a complicated operation, needing control from anyone, but the ultimate let go of all attachments, including the patient letting go of their own body. However, someone must have the keys to gain access, and visit at least once per day, to find and deal with the body. This service could be provided by a carer, relative, neighbour, nursing agency, night sitter, or as last resort, the police.

If the patient lives alone, but wants someone to be there when they die, then a carer and/or sitters willing to provide this service have to be found. All those who write about being with a dying person say that it a great privilege and learning experience to be present at another’s death. However, those who have not had that experience do not see it that way, being fearful, and believing that they could not cope. There may be someone, (as I was), who is willing in principle, but needs reassurance that they will be given whatever support and help that they need to cope. This means having the doctor’s phone number on 24- hour service, the undertaker’s phone number, instructions (eg to watch the breathing).and respite relief from others such as night sitters (see appendix 3).

If the patient lives with a spouse or family, they will probably be frightened at the prospect of the patient dying among them at home. They may need a lot of reassurances before they will take the patient home to die, as described above. I hope that some, at least, could be persuaded by the increased control that will give, and a better start to their grieving process, as described below.

6 Grieving and actions required after the patient has died
There is a sea-change post death, because the spirit of the person who was ill, and at the centre of attention, has departed and is now gone. If we were machines we could adjust to this new situation instantly, and with our minds we may think that we should be able to rationalise the situation, and move on. However, we are not machines, but complex bundles of spiritual energy, and we need time to come to terms with our new life without the deceased. This time is known as grieving.

Grieving may take months, years, or we may take it to our own grave. If we loved the deceased, our energies were intricately bound up with theirs, creating deep attachments and dependencies which are broken at death. We then describe bereavement as ‘devastating’, ‘gutting’, or ‘like losing a limb’, ‘the bottom has dropped out of my world’. We may speak of our spouse as ‘our other half’, and feel that when they die we are only half a person.

The shock of death is worst at first, so that for a day or two we may be going round like a zombie, with odd symptoms like not being able to remember our own phone number, or not registering a single word of what we have just been told. My dentist told me that people often create dental problems by gnashing their teeth in their sleep at night. During grieving our unconscious mind is adjusting to cope with uncertainty and fear about how we are going to manage in the future.

What we need most in those early days of grieving is time. A common reaction is to go into denial that the deceased is really dead, and it is just a bad dream. The remedy for this is to spend time (up to a day or two) with the body, able to touch, stroke and kiss it, so that we experience deep in our being that the spirit that gave our loved one life has really departed. If this access is denied, as in cases of persons ‘missing, presumed dead’, the grieving process may not even start, as the mind may continually expect them to walk in anytime. An example is the McCann family, whose child Madeleine was abducted in Portugal in May 2006, so there is uncertainty about whether she is still alive or dead. The parents are still acting as if she is alive.

For that reason, if death happens unexpectedly, as with a car accident, or in hospital, the body should be sent home rather than to the morgue. The relatives may be persuaded to accept it by being told that they can then start their spiritual experience of grieving in the presence of the body, as in the traditional ‘lying in state’. This has tended to disappear with our modern squeamishness, despite death being shown so often on film and TV, but the reason behind this hypocritical difference needs to be understood.

When we see death in projection we treat it mentally, as if it were a dream and unreal (which in a way it is) . When what we think ‘only happens to others’ actually happens to us, our minds tend to go into denial, repressing what we ought to be facing by hiding it. This hinders the grieving process, which is only complete when we have accepted the death spiritually, let go of our previous identification and attachment, and moved on.

Some health practitioners tend to hinder rather than help the acceptance of the death of their patients, (as those mentioned above did to me, with the above mentioned deception) . If they do this, it is because they have not yet come to terms with their own death. Until they have accepted their own mortality, they cannot accept their patients’ mortality.

The sort of acceptance I mean is spiritual wisdom (not knowledge) and usually requires the person to have had a near death experience (NDE) themselves, or of someone very dear to them (as I did with Janet) It cannot be acquired mentally, by watching people die on film, or even watching patients die in hospital, unless you are spiritually present and emotionally moved by it. This is why being present at another’s death can give you wisdom. (By 'present', I mean in an altered state of consciousness, as in meditation, which is not our usual mental state, but a state of no mind. I have done several meditative courses (one lasting 5 days) which enabled us to visualise our own death, which helped me to come to terms with my own, and others’ death, and write about it as I am now doing.

7 What can we do about it? Give staff copies of the following leaflet to be given to terminal patients and their carers.
I suggest the leaflet in appendix 1 as a draft for discussion, comment and amendment: When agreed, it should be piloted in hospitals and GP surgeries.

References
1 Paper by John Kapp ’Reducing the numbers dying in hospital (bedblocking) ‘ dated 17.3.08 section 9.24 of www.reginaldkapp.org
2 Living wills can be downloaded free, with explanations from www.compassionindying.org.uk


Appendix 1 Leaflet to plan a good death

Draft leaflet for terminally ill patients and their carers, relatives and staff looking after them.



PLANNING YOUR JOURNEY THROUGH THE DOOR MARKED ‘DEATH’

1 The importance of planning
Failing to plan is planning to fail. This is why we plan practically every aspect of our lives – except our death. People tend not to want to talk about death because they are naturally fearful about it. However, facing our fears (even our fear of death) is beneficial. This leaflet is written to help you and your carer and family to consider the important issues around your dying and death. These are the interventions that you do not want to have, and making the arrangements with your carer and family for you to have a good death at home so that everyone feels that they did their best for you.

Although the healthcare staff are doing everything in our power to make you better, we are not God, so cannot prevent your death. All of us have to die sometime, so it is not helpful to pretend that we will live for ever. Just as the quality of your life is important to us, so is the quality of your death. Nothing can be managed well if it is not planned beforehand, so it makes sense to plan for your own good death.

2 What interventions do you not want to have?
If you want to be allowed to die naturally, without interventions, you should have signed a living will form ‘Allow a Natural Death’ (AND) saying which interventions that you do not want. To alert medical staff that you want a naturally death, you should wear a ‘AND’ tag on your wrist. The tag tells them that you have made a living will, (now legally known as a Lasting Power of Attorney (Personal Welfare). A blank AND form is attached to this leaflet, (see appendix 2) for you to sign if you want to. Please discuss it with you family, friends and healthcare staff. It is possible to get free Living Will forms downloaded from the internet. (2) which give the legal explanations in simple terms.

Related questions that you should also have considered are:
a) Have you made a will stating what you want to happen to your possessions?
b) Have you appointed a next of kin/ executor who knows where to find your will, and who will deal with your things when you have gone?

3 Where do you want to die?
Thinking about where you want to die and with whom, will help you to have a better death, so you have to decide where you want to die. The most appropriate place is where you live, namely your own home. Hospitals are not set up for dying, but for making people better, so you cannot have a good death in hospital. Death is not a complicated operation that needs skilled people or apparatus, but a natural process of simply letting go of your body so that you slip away into another world. Every living creature on earth dies like this without making any fuss. Only humans believe that death as a big deal.

If you are in hospital, but they cannot give you any treatment that will make you better you should ask to be discharged. There is no point in being in hospital if they are just giving you pain killers, as you can be given those at home. There is a hospice at home service which will come if they are informed. You should go home to die in peace. Please consider the following issues and discuss them with the people concerned. Let your carer and healthcare staff know what you have jointly decided so that your wishes can be recorded in your notes, and implemented.

4 Making the arrangements for you to die at home
If you live alone, and want to die alone, someone will have to clear up your body after you have died and it is dead. Who could that someone be? If you do not want to die in your own home, have you a relative or friend who would let you die in their home? Wherever you decide to die you will be supported by doctors and nurses to provide palliative care (pain relief) who are no more than a phone call away, 24 hours a day.

If you live with others, they must feel that they can cope with you dying at home. They may be fearful because they have never done this before, but there is nothing scary for them or you to worry about. You will just fall asleep and eventually stop breathing. If you are in pain, you can be given a syringe driver which continuously injects you with morphine. If the pain breaks through, you can give yourself a boost, so it is under your control. If you or your carer is worried about anything, they can call a doctor or a nurse at any time. Most people find that being present at a loved one’s death is an experience that they wouldn’t have missed, and from which they gain wisdom.

Your body will know by various signs when its’ time to die has come, such as funny breathing, and when you cannot see the tip of your nose because your eye muscles have contracted. Listen to your body and tell your carer when you think that your time has come for your body to die. The diagnosis for dying is when 2 out of 4 of the following signs apply to you:
you are bed-bound,
you can only take sips of fluid,
you are unconscious or semi-comatose,
and you can no longer take tablets).

5 Advice for your carer, family and friends after you have died
Your loved ones may find that they need hours or days in the privacy of your home to be with your body and experience that you are no longer in it. The news of your death is not like other facts which the mind knows just by being told. The message has to sink deeply into their spiritual being, and be embodied. They may want to touch, stroke or kiss your body, which is a natural thing to do, and will get their grieving off to a good start.

If you die in hospital this time in private for your relatives to mourn undisturbed with your body will not be possible. In the interests of other patients your body will have to be quickly removed to the mortuary, or the undertaker will take it away. Your relatives may go and see it by appointment, in their chapel of rest, but it is not as natural or peaceful as at home, leaving your body undisturbed. When your loved ones have just been bereaved, the last thing they want is hassle.

If you have died alone someone must have the keys of your front door and will take responsibility for going in at least daily to check on you, and deal with your body after you have died, They could be your next of kin, relative, friend, neighbour, night sitter, nurse, or as last resort, the police. They must have agreed to do this before you die, and be prepared to at least initiate the following actions, all of which will have to be done by someone.

Call the doctor to sign your death certificate, (two doctors must sign if you want your body to be cremated) Inform relatives and friends that you have died. Register your death at the registry office. Arrange your funeral, and inform relatives and friends when and where it is. Other leaflets giving more details about bereavement support are available.

With best wishes for a good remaining life, and a good death.





Appendix 2 . Proforma living will / Lasting Power of Attorney (Personal and Welfare)

ALLOWING A NATURAL DEATH (AND )

Including Do Not Attempt Resuscitation ( DNAR)
Record of Decision

Patient's first name ………………….......... Surname…………………………………….….
Address…………………………………………………………………………………………
………………………………………………………………Post code.………………………
Phone number(s)………………………………………………………………………….....
Date of Birth ………………………………………
NHS number……………………………………….


I, the above named patient, am of sound mind and have the capacity to make the following decisions. I have decided the following:
I appoint (name)………………………………………………………………………
of (address) ………………………………………………………………………………...........
Phone number……………………………………… Relationship to me……………………
as my Lasting Power of Attorney (Personal and Welfare) to make decisions on my behalf should I lose capacity to make them for myself.

I wish to be Allowed to have a Natural Death, (AND) at home, without prolonging it at an unacceptable quality of life to me. I do not want to be given the interventions that I have marked with an X in the boxes below. I understand that I can change my mind at any time by tearing up this form. I agree to wear an AND tag on my wrist to inform medical staff of this my decision to allow me a natural death.

a) Do not take me to hospital if I have a crisis because I do not want hospital treatment, and I want to die at home.

 

b) Do Not Attempt Resuscitation (DNAR) if I become unconscious because I want to die in my sleep.

 

c) Do not put me on a ventilator if I stop breathing because I want to die naturally

 

d) Do not feed me intravenously or by tube if I stop eating, because I do not want to be fed that way.

 

e) Do not give me antibiotics if I get an infection because I do not want them

 

f) Do not give me painkillers if I am in pain because I want to die consciously.

 

g) Do not give me any other treatment aimed at prolonging or artificially sustaining my life because I do not want it.

 

Signed by the patient……………………………………..........
Date of signing…………………………..

In the presence of Witness 1 signature …………………………………….....
Name in capitals…………………….……………………………………..........
Address……………………………………………..…………..…………......................
……………………………………………..……............. Post code......................
Occupation……………………………………......

In the presence of Witness 2 signature …………………………………….....
Name in capitals…………………….……………………………………..........
Address……………………………………………..…………..…………......................
……………………………………………..……............. Post code......................
Occupation……………………………………......

GP’s Name…………………………........
Practice Address…………………………………………………………………….........
……………………………………………………………………........Post Code................
GP’s Signature, signifying that I have noted this Lasting Power of Attorney……………………………………………………………………………
Date……/……./…… Time ……………….

Consultant's Name…………………………........
Consultants signature signifying that I have noted this Lasting Power of Attorney ……………………………………………………………………………………..
Date……/……./…… Time ……………….

To healthcare staff: Please display this form on the inside front cover of the patients medical notes



Appendix 3 Caring for the terminally ill at home

Letter to the editor of Daily Mail, published 8.3.04 from the Rev Anthony J.Carr

Sir,
As a chief nursing officer, I undertook a survey of patients who died of a terminal illness (report Mar 2, see also letters Feb 4 and 14) within 3 days of being admitted to hospitals in Newcastle on Tyne throughout 1975. In conjunction with the city’s GPs we identified 350 such patients. The main reason given for admission to hospital was that the relatives were exhausted by the need to provide 24 hour care.
With the co-operation of the city council, which provided 8 night sitters, we developed a 24 hour nursing service for a few days at a time. A dying person would have a night sitter, and a district nurse would attend every 2 or 3 hours, if necessary to give pain relieving drugs and nursing care.the relatives could go to bed knowing that their loved ones were being adequately cared for. The relief for the carers and the difference those few days made to the families were truly remarkable. After one year in operation we estimated we had saved 351 patients from dying in hospital.
A general hospital is the last place we should send our terminally ill relatives. Too many staff consider it normal to go to great lengths to try to add a few hours or days to a dying patient. Gone is the attitude in the acute hospital setting that to nurse a patient to a peaceful end is a valid aim.
A countrywide system of home care for the terminally ill would be a sign of our civilisation.
Yours sincerely
Anthony J Carr,
11 Butler Rd Solihull B92 7QL, 2.3.04

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