by     JOHN KAPP

21st September 2005


Caroline Huff
Macmillan Nurse Director SCN
Dear Caroline


At the last meeting on 7.9.05, it was agreed that the sub-group should write the following paper. This is a first draft for comments and amendments by end Sept, please.

To Dr Crista Beesley, for ‘End of Life’ Group meeting on 18.10.05
Dear Dr Beesley


The Supportive and Palliative Care sub-group of the Sussex Cancer Patients Forum would like to present our views and recommendations on this subject for your ‘End of Life’ group to consider.

1 The problem of dying in hospital
About 3 out of 4 people wish to die at home, but only 1 in 4 actually do so. This means that 1 in 2 people die in their non-preferred place, in hospital. This morbid statistic is bad for everyone. Hospitals are not set up for dying. The dying patient blocks a bed which is badly needed by somebody waiting for an operation. The body has to be immediately transferred to the mortuary, preventing the family to grieve with it quietly as they would wish. Death is often a surprise to the relatives, which adds to their distress, and causes complaints (10% of total).

If the terminally ill patient could avoid being admitted, or be sent home to die, everybody would benefit, a win win solution. Waiting times for operations would be reduced at no extra expense.

The issue is far from new. The National Audit Office report on Cancer, dated 25.2.05 stated that ‘cancer patients often do not die in their place of choice’. The Gold Standard Framework of community palliative care addresses what needs to be done, and this is one of the aims of the SCN Palliative Care Plan. However, only a minority of GP practices have yet signed up to it. (25 in Brighton, 0 in Hastings).

The issue of dying in hospital is not specifically mentioned in the Plan, despite our request for it to be included when the plan was out for consultation last December. We think that this is an omission, and we ask again for it to be included. Whether or not people die in their preferred place should become the key measure of the success of the Palliative Care service.

There should be an action plan, setting a target of say halving the proportion of people who die in hospital (or doubling the number who die at home) say by 2011. If 3000 people die each year in SCN, (Sussex) meeting this target would unblock 750 beds for say an average of a month, say 20,000 bed nights, significantly reducing waiting times.

2 The solution – plan for a good death, and put it in the notes
Terminal patients are inappropriately admitted to hospital because they have a crisis which was not anticipated. The Gold standard stresses the need for better anticipation and planning. This means that doctors and nurses should raise the question of where the patient wants to die with the patient and carers in good time, before there is a crisis.

Assuming that the patient and carer answer this question ‘at home’, (the majority choice) this wish should be recorded in the patient’s notes. Out of hours doctors and ambulance staff can thus be informed not to admit them to hospital, or if the patient is already in hospital, he or she can be discharged, and sent home to die.

This solution sounds easy, so why does it rarely happen? Because staff avoid asking the question where do you want to die? even when the patient is in extremis. The Liverpool Care Pathway says that dying can be diagnosed when two of the following four criteria are met: the patient is bedbound, only able to take sips of water, semi-comatose, no longer able to take tablets. These are obvious even to untrained people, but the problem is not in recognising impending death, but having the courage to say so.

3 Why are patients not asked where they want to die?
Nobody wants to talk about death, even when it is staring them in the face. Fear may put them in denial, making them blind, and preventing them from mentioning it, even after it has happened. Then denial may turn to anger, giving rise to complaints. Those concerned have different reasons for not asking where dying patients want to die, as follows:
a) A dying person reminds everyone of their own mortality, the fear of which puts the question out of their mind
b) The staff may see death as failure, so do not want to mention it in case they get blamed for it.
c) The carer and family may be dependent on the patient, and cannot bear to lose them or let them go.
d) The patient knows of this dependency, so keeps up the pretence that they are going to get better.
e) Staff may have been instructed not to mention it, as follows. ‘I was trained as a nurse 20 years ago and my initiation into the dying process at the age of 18 was being told that I was never to mention the subject even if the patient asked, nor was I ever to speak about it to any relative, no matter what the situation. I witnessed some appalling deaths. We were allowed to lay the bodies out, but we were not allowed to talk about it’ From a letter to the Natural Death Centre (ref 1)

There is an old joke that the only certainties in life are death and taxes. If palliative care services are to be improved doctors and nurses must change their attitude to death from a failure to an inevitability. It should be part of their job to initiate a plan for the death for their terminally ill patients. It seems strange to us that where everything else in the NHS is hypo-controlled, death is not managed at all.

A member of staff (doctor or palliative care nurse) should take the initiative by broaching the subject of death. This could be done by simply asking the question ‘where do you want to die?’ Or it could done by giving them a leaflet (containing the question) which they can give to patients and carers to read, with words like ’it may be time for you to consider this’ (see draft in para 5) That initiative would give the patient and their family permission to make a death plan.

Death will then not be a surprise, and the energy around the patient could change from frantic interventions to peace and quiet for everyone to prepare for the death. Everyone will then be better able to cope, and have a better experience.

Support required from staff for patients to have a good death
a) Broach the subject in good time, before a crisis, to allow the patient and relatives to think the unthinkable.
b) Arrange a pre-death meeting of all concerned to plan the death. (where, with whom etc).
c) Answer the questions of patient and family honestly and fully.
d) Give a phone number of an advice line that is available 24/7.
d) Give pain control, eg syringe driver, with anticipation and advice for when the pain breaks through
e) Provide appliances, such as suction to clear throat, wheel chair, padded chair, commode, as needed
f) Help arrange respite relief for carer, by other family members, night sitters, Marie Curie nurses, hospice at home service etc.
g) Advise carer to engage an undertaker before the death, so that they only have to phone after it.
h) Reassure the carer and family that there is nothing to be frightened of when a person dies. They just have to hold the space calmly, unplug the phone, put on their favourite music, hold their hand, and wait for them to stop breathing.
i) Advise them that the body can be kept at home for days, during which time friends and relatives can touch it, and kiss it. It takes time to come to terms with losing the spirit which has departed. This gets grieving off to a good start, and facilitates letting go, which is essential if the relatives are to move on.
j) Give advice on registering the death and arranging the funeral, eg by giving a leaflet.
k) Give a leaflet on bereavement support.
4 Recommendations
a) Make the key measure of the success of the Palliative Care service whether or not people die in their preferred place, usually at home, with.a target of say halving the proportion of people who die in hospital (or doubling the number who die at home) by 2011
5 References
1 The New Natural Death Handbook, p 23.
2 ‘Better Managed Deaths’ paper for the Bereavement and Loss committee, 29.9.04 by John Kapp

6 Draft leaflet for palliative care doctors and nurses.


Dear doctor or nurse

The objective of this initiative is to help you to help your terminally ill patients to die in the place of their choice, which is usually at home. We know how difficult it is to broach the subject of where they want to die, and we hope that the enclosed leaflet will make it easier for you to do this.

You can give it to them with words like ‘It may be time for you to consider the questions in this leaflet. Please read it and let us know what you think.’ It is better to give it earlier rather than later, for the following reasons.

This difficulty of talking about death makes everyone tend to keep putting it off. However, if their wish to die at home is not in their notes, when a crisis occurs they tend to be admitted to hospital. There is then the added problem of getting them discharged to die at home. If you can establish their wishes before there is a crisis, and put in their notes, an inappropriate admission can be avoided.

If they are already in hospital, please establish where they want to die, by giving them the leaflet. If they wish to die at home, they will have to be discharged. This will require the permission of those with whom they live, so they too should be given the leaflet. It may be appropriate to get them to come to a pre-death meeting with you or other staff, to discuss how the death is to be managed.

Patients and their families look to you as an expert for guidance in managing death well. Please have the courage to initiate discussion about it, and answer their questions honestly and fully. Please check that you can provide all that the leaflet promises, and let us know if you can’t.

As this is a pilot, we would be most grateful if you would give us feed back on whether or not you found it helpful, and any suggested amendments. Please fill in the enclosed questionaire and return it to us.

7 Draft leaflet for terminally ill patients and their carers


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 do not to want to talk about death because they are naturally fearful about it. However, facing our fears is beneficial. Although our staff are doing everything in our power to make you better, everyone must die sometime, and death is not a failure.

Just as the quality of your life is important to us, so is the quality of your death. We can only give you a good death if you tell us what you want beforehand. This leaflet sets out the issues around dying, so that you can plan ahead, with the support of your carer, family, and our staff.

The main questions are where you want to die and with whom. . Most people want to die at home with their loved ones with them. If so, discuss it with them and the staff, perhaps at a pre-death meeting. Your joint decision will be put into your notes, so that all staff can be informed what you want, and ensure that your wishes are implemented.

Where do you want to die?
Hospitals are not good places to die, because they are not set up for dying, but for making people better. Death is not a complicated operation that needs skilled people around you to control it. It is a natural process of simply letting go of your body so that your spirit slips away into another world. Every living creature does this without making it a big deal.

The places you could chose to die in are a hospice, a nursing home, a relative or friend’s home, or your own home. Most people wish to die in their own home, but need the permission of the others with whom they live. The NHS staff will give you and them our full support. There may be a ‘hospice at home’ service or night sitters available. If you or your carer is worried about anything, we will give you and them the number of an advice line to call at any time.

If you want to die alone at home, someone must have the keys and take responsibility for going in at least every day to check on you, and deal with your body after you have died, That person could be your next of kin, relative, friend, neighbour, night sitter, nurse, or as a last resort, the police. They must have agreed beforehand to do this, and be prepared to initiate the actions in the section below ‘Advice for your carer’.

How will you know when you are dying?
We diagnose dying when 2 out of 4 of the following criteria apply : you are bed-bound, you can only take sips of fluid, you are semi-comatose, you can no longer take tablets. You will probably know you are dying before you get that far. Please tell us when you think that you are dying. Please also tell us when you don’t want any more interventions such as pills (except pain relief, which you can have whenever you need it right up to the end).

Eventually you will just want to be left in peace. You may want to think about forgiveness, regrets and goodbyes. Is there anybody who you want to see, to get spiritual help, healing, or a religious leader? If so, call them, or ask us to do so for you.

When the time comes for you to die, there is nothing scary for you or those with you to worry about. 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, or you can call a doctor.

Advice for your carer.
Being present at a loved one’s death can be your last gift to them, and a spiritually moving experience for you. It is much easier for you to manage things as you would like them to be if your loved one dies at home, because you are in full control there. If they die in hospital, you will feel hassled. You will have to fit in with the staff regime, visiting hours, and the needs of other patients. After the death the body will have to be quickly removed from the bed in which they died, and you may not be able to get it back to mourn over.

Taking charge of a loved one’s death is not difficult. You just have to hold the space calmly, unplug the phone, put on their favourite music, hold their hand, and wait for them to fall asleep and stop breathing You will both find it calming if you sit holding hands in meditation, breathing together to synchronise your brain waves.

After they die, the energy totally changes. The spirit has departed, and the absence of it has to be experienced, and sink deeply in to your being. Take your time to say goodbye personally and often in the way you want You may want to touch, stroke or kiss the body. That is a natural thing to do, and allowing yourself to do it will get your grieving off to a good start. You have to come to terms with losing them, to let go, and move on. Ideally the body should be left where it died for at least a day, and be made accessible for any relatives and friends that may wish to meditate on it in that way.

Contract with an undertaker before your loved one dies, so that you can mobilise their support with a single phone call afterwards. They will collect and deliver the body according to your instructions. If they did not die at home, ask the undertaker to bring the body home for you and family and friends to grieve over at your leisure. However, they may be prevented by hospital protocols, such as infection control, post mortems, coroners inquests. The body can still be viewed in the chapel of rest, but it will not be like home.

The administrative details that need to be done after death are as follows: Call the doctor to sign the death certificate. Inform relatives and friends. Register the death at the registry office. Arrange the funeral. Other leaflets giving more details about this may be available from the staff. You may ask for a ‘post-death meeting’ with staff if you wish.

With best wishes for a good remaining life, and a good death, from the End of Life Committee, who wrote this leaflet, and would appreciate any comments on it.

for doctors and nurses to fill in and return to ……………………………………….

1 Is the leaflet useful in helping you establish where the patient wishes to die? Yes no don’t know

2 If yes to q 1, about how many leaflets have you given out?…………………………

3 How many patients wanted to die at home?……………………………………..

4 How many did die at home……………………………..

5 How many are still alive………………………….

6 If no to q 1, why is the leaflet not useful, and what would be more useful …………………………………………………………………………………………………………
Please enclose a copy marked up with your comments.
Thank you for taking the time to respond.

John Kapp 01273 417997

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