Paper for BHC PCT and BSUHT                             17.3.08
By John Kapp, Patient and Public Involvement Forum (PPIF) representative on Brighton and Hove City Primary Care Trust (BHC PCT), and Bereavement and Loss committee (B&LC) of Brighton and Sussex University Hospitals Trust (BSUHT) 22, Saxon Rd, Hove BN3 4LE, East Sussex   Tel: 01273 417997

1 Executive summary
This paper calls on BHC PCT and BSUHT to make Brighton and Hove a pilot beacon centre of excellence by:
a)       adopting a target of reducing the number of deaths in hospital by a factor of three
b)       reclassifying those who are dying in hospital as bedblockers
c)       eliminating the hidden subsidy by invoicing the PCT with the cost of dying bedblockers
d)       warning the relatives of those dying in hospital that they will lose control of the body
e)       inviting terminally ill patients to sign an Advance Decision form specifying where they wish to die, and the interventions to prolong their lives to which they DO NOT give consent.

2 The bedblocking problem--1 in 2 patients die in their non-preferred place (hospital)
The worst statistic in the NHS is that 50% of people who die do so in the wrong place. Polls show that 3 out of 4 patients want to die at home. Actually 3 out of 4 die in hospital, so 2 in 4 are dying in their non-preferred place. This is lose-lose issue for everyone – patients, their relatives, staff, other patients waiting for treatment, hospital budgets, taxpayers. There are no winners in this issue.

The majority of the lifetime healthcare budget for every taxpayer is spent on end of life care. This big investment is made on interventions to prolong their life of a quality that is at best doubtful, and at worst dreadful. The interventions are often against their best interests, being inappropriate and futile, and performed without consent, as the patient is considered to lack capacity to make informed decisions because of his illness.

This ‘consent vacuum’ allows the staff to project their own limiting belief (death is a failure because the patient really wants to live) when in reality they want to die. Relatives often connive with staff and acquiesce with desperate interventions, because they are so attached to the patient that they believe themselves dependent on them continuing to live. (This belief is never true, as discussed in paragraph 6)

The purpose and function of hospitals and their staff is to make people better and discharge them. The purpose and function of hospices is to help people to die in peace. Although death in hospital cannot sometimes be avoided, good policy is to design premises and to train staff appropriate to their purpose and function. The purposes and functions of hospitals and hospices are poles apart, so it is impossible to combine them satisfactorily in one institution.

We live in a society in which every organization tries to be a one stop shop. (eg Tesco selling insurance) The bedblocking problem is caused by hospitals trying to be hospices. The right admission policy for hospitals is that nobody should be admitted to die. If perchance they are admitted, it should be recognised as an inappropriate admission, and best efforts made to discharge them, both because they block beds which should be occupied by those who can be cured, and for their own good, as described below.

I know that it is not politically correct to call patients ‘bedblockers’. The new term is ‘delayed transfers of care’. I do not use the new term in this paper because it devalues the issue and brushes it under the carpet. It was invented by empire builders whose interest is in keeping the status quo. I am against them because I want the issue to be squarely addressed, and the system reformed, so I continue to use the old name. (like calling a spade a spade)

Public awareness of this bedblocking issue is rising. In 2006 the Audit Office publicly criticized the NHS for their poor record in dealing with it. In early 2007 Ester Rantzen staged a TV programme entitled ‘Planning a good death’. Serial TV programmes such as ‘Casualty’ highlight the dilemmas of ambulance paramedics who sometimes have to resuscitate patients and take them to hospital against the wishes of them and their families. The recent Mental Capacity Act promotes the human right of specifying end of life wishes in Advance Directives or Living Wills, which are called Advanced Decisions in the act.

3 Target policy to reduce the numbers dying in hospital
There should be a government target to reduce the number of patients dying in hospital by a factor of 3. This would reflect patient choice and change the present number dying there from 3 out of 4, to 1 out of 4. At present in BSUHT hospitals about 6 people die every day (2,500pa) so the target should be to reduce this to 2 per day (800pa) This would allow the number dying at home in Brighton and Hove to rise from 2 per day now, to 6 per day in future.

When I have said this in committee to representatives of BSUHT they do not disagree with me. However, they emphasise that it is not in their power to deliver that target, because they do not control who is admitted. They are providers of healthcare, and their job is to treat every patient who is in their hospital according to the high standards of care laid down by the government.

They tell me that I am addressing the wrong people, and that I should take my message to the PCT who are the commissioners. I have tried to do so but I have not yet been able to engage them in meaningful dialogue because (unlike BSUHT) they do not have patient representatives on their committees. Everybody is too busy to seriously consider policy issues which are outside their immediate remit. I have learned that there are two categories of bedblockers, which I call ‘overt’ and ‘covert’, as follows.

4a) Overt bedblockers These are patients whose treatment has finished, but who cannot be discharged because they do not have sufficient support at home for their convalescence, and there is no suitable intermediate care bed available. The typical number of overt bedblocking in BSUHT hospitals on any average day is 60. The cost of overt bedblockers is invoiced to the PCT by means of a formula which applies to the excess days beyond the allocation for the admitted condition.

4b) Covert (hidden) bedblockers These are patients who are terminally ill, (beyond curative treatment) and are dying in hospital because they are too ill to be discharged home. They are not counted as bedblockers, so the cost of their beds is not invoiced to the PCT. I do not know why there is this anomaly, but I suspect that it is a hangover from the old days of block contracts, when hospitals were regarded as charitable institutions, under the ‘cradle to grave’ welfare state.

Covert (dying) bedblockers should be counted as bedblockers because that is what they are. The purpose BSUHT hospitals is making people better and discharging them. They are not hospices. Failure to count covert bedblockers as such causes BSUHT to fail to invoice the PCT for their stay in hospital. BSUHT are thereby giving the PCT a hidden subsidy.

I believe that this hidden subsidy is the root cause of the problem of half the people dying in the wrong place. If the subsidy was stopped the problem would be solved. The lose-lose situation would be turned into a win-win for everybody. To do this BSUHT have to invoice the PCT with the full cost of their stay in hospital of all bedblockers, overt (convalescent) and covert (dying).

Two years ago (April 2006) the government announced the biggest shake up in the history of the NHS. We heard that the block contract was to be ended. Payment By Results (PBR) would mean that the money would follow the patient. The GPs would hold the budget for each one of their patients. Under Practice Based Commissioning (PBC) GPs would commission whatever interventions their patients chose, and pay for it out of their individual budgets.

5 Commercial hospitals
The financial changes should mean that BSUHT (and all other NHS hospitals) would change from being charitable to commercial . like the Nuffield hospitals, which have never had a problem with bedblocking The Nuffield do not subsidise anybody. They invoice every service user for every service delivered, with no exceptions for charitable reasons. If you can’t pay, you can’t come. However, if you can pay, you can have a bed for as long as you like, including to die in.
>br> In discussion I was told that there is no point in invoicing the PCTs for bedblockers because it is just passing the bill to another part of the NHS. I do not accept that argument. The point is that over the issue of bedblocking the commissioner / provider split is wrong. The provider (BSUHT) is providing a service (covert dying bedblocking) which the commissioner (PCT) neither commissions nor pays for.

Over the last few years I have repeatedly urged the BSUHT and PCT (by emailing Messrs Molyneaux and Goswami) to change the accounting rules for bedblocking, and to invoice the PCTs with the full amount of the subsidy. I could not engage them, perhaps because they do not make these rules. What I want to know is whether I am right that if the rules were changed as I suggest, the responsibility for action to end bedblocking would pass to those who can solve it, namely the PCT and the GPs as described below.

I have estimated a rough figure for the hidden subsidy for covert (dying) bedblockers. I know that 6 people die every day, but I do not know for how many days they were not invoiced. If the average is 10 days, then there will be 60 covert bedblockers on any average day. ( co-incidentally the same number as overt ones, but their stay in hospital is invoiced to the PCT) If the true cost to BSUHT per bed night is £800, the annual cost of the subsidy of covert bedblocking to BSUHT would be 60 peopleX£800 per dayX365days pa = £18million pa. This is roughly equivalent to BSUHTs annual deficit.

6 Transferring the subsidy to the PCT
If BSUHT did invoice the PCT with the above £18mpa hidden subsidy it would eliminate their deficit. It would pass it down the line to the PCT, who would be taken from a present roughly breakeven position to an £18m deficit. This would transfer responsibility for bedblocking from BSUHT, (who are powerless to do anything about it) to the PCT (who do have that power). This is because the PCT controls the GPs, who control the budget for each patient, so can commission the most appropriate referral location for dying.(at home with support).

GPs are the best paid doctors in the EU, at salaries of over £100kpa. It is their job to commission and pay for appropriate support for both convalescent (overt) and dying (covert) patients. As I have said above hospital is not appropriate, so should not be an option for commissioning. The preferred place for all patients to convalesce and to die in is at home. The required support should come from relatives, friends, neighbours, the voluntary sector in the local community, intermediate care beds, nursing homes, hospices, Marie Curie nurses, hospice at home etc in that order.

Under the present arrangements the GPs are let off the hook of responsibility for commissioning this support for their dying patients. Why should they bother while the hospital loo0ks after them for free. If the subsidy was transferred to the PCTs, the GPs would be put under financial pressure to reduce the costs of their patients dying, and restore the personal service that used to be given by the ‘family doctor’ at the end of life, when it is most needed.

I was told by hospital staff about an incident in which a GP was said to be ‘incandescent’ because his patient was sent home to die alone, in spite of the fact that this was the patient’s wish. If the GP had had his way, and the patient had blocked a bed in hospital for a month while dying, the cost to BSUHT would have been £24,000. (30 days at £800 per day). Would the GP still have wished his patient to die in hospital if he knew that his practice would get a bill for £24,000 for that service?

7 Why is home the preferred place to die?
There is a trend in society to medicalise everything, including dying. However, this is misplaced, because dying is not a complicated process requiring medical intervention. It is natural. Every animal does it without any fuss, usually by going to a quiet place and stopping eating and breathing. Human beings are basically animals, and revert to their animal nature at the end of their lives. Everybody should all be allowed to do the same. The only reason why we do not is because our minds are conditioned with limiting beliefs around death.

Patients are conditioned to believe that they cannot die because others are dependent on them continuing to live. This belief is deeply engrained in all of us because it is a survival mechanism. Immediately after our birth it is true that we were dependent on our mother feeding and loving us. That primordial belief remains in our unconscious minds all our lives, and makes us cling to others at the time of their death and our own death. However this belief ceased to be true a few days after our birth, and has never been true since. Even if we lost our mother in giving birth to us, we survived because we had a foster mother.

Healthcare staff need to be needed. That is why they took the job. They are conditioned to believe that death is a failure because all patients want to continue living, and that they are needed by patients to keep them alive, their ‘brother’s keeper’. These beliefs are sometimes true, and sometimes not true. Staff in ambulances and hospitals are equipped with technology which can keep patients alive indefinitely on life support machines. If they stop breathing, they can be put on a ventilator. If their heart stops, they can be defibrullated. If they get an infection, they can be given antibiotics. If they stop eating, they can be fed intravenously. As staff have these tools it is natural that they want to use them.

However, it is not true that all patients want to live. Many do not; they really want to die, because deep down they know (like an animal) that their time has come. Examples are people who commit suicide and are angry with those who resuscitate them. If the will to live has departed, life-prolonging interventions are inappropriate because they are neither needed nor wanted by the patient, whose wishes should be respected.

The problem with ambulance and hospital staff is that all too often the patient’s wishes are not respected. They fail to get consent, and perform inappropriate and futile interventions. There are two reasons for this. First, because staff do not listen to the patient, who they think (rightly or wrongly) has lost capacity. They project their own belief (that the patient really wants to live) ‘for his own good’. Secondly, the relatives often connive with the staff in this projection, because they are under the illusion (wrong limiting belief) that they are dependent on the patient continuing to live.

The word ‘doctor’ comes from latin ‘doctare’ meaning to teach. Doctors should rediscover their original purpose in society and teach their patients how to live healthily, and how to die peacefully. They should only commission interventions which are appropriate and truly consented for. There comes a time in everybody’s life when they are dying. This time should be diagnosed, and patient, family and staff informed so that they can prepare for the soul leaving the body, when the only appropriate intervention is pain relief. The Liverpool Care Pathway and the Gold Standard Framework for dying promotes this, but is yet to be applied in the majority of hospital wards.

8 The importance of viewing the body
One of the most important issues in grieving is for the relatives and friends to experience deeply (in their bodies, not just in their minds) that the soul has really departed from the body. This can only be achieved by viewing and touching it in deep contemplation, which may need hours, or even days. In former times this was achieved by the ritual of the body ‘lying in state’ in an open coffin for the days between death and the funeral, and it was made available for all who so wished to view it at their leisure. When the body disappears (eg Madeleine McCann) the relatives may never be able to grieve and get over their loss.

The sooner the viewing of the body is done the better, as it helps to get over the shock of the death.. The effect diminishes with time, and the body starts decomposing and stinking after a few days unless refrigerated. Ideally viewing should be in the patient’s natural surroundings at home. If they died at home this is easy to arrange, as they can be viewed where they died, or as rearranged.

However, if a patient dies in hospital, it is difficult for relatives to view the body in the way needed for them to have the deep experience mentioned above. If they are lucky viewing will be possible in the hospital’s viewing room by appointment for a limited time. However, regulations such as infection control and post mortem examination may make it unavailable for viewing for days, and prevent it from being removed from hospital premises. When the preferred place of death is being considered, healthcare staff should warn relatives that they will lose control of the body if they die in hospital, and they may not be able to view it when they want.

9 Advance Decisions
Transferring the subsidy to the PCT would also give GPs incentive to get their terminally ill patients to sign an advance decision form while they still have capacity to make decisions. The form should specify where they want to die (eg at home) and the interventions that they DO NOT WANT (eg rescusitation, antibiotic, ventilation, intravenous feeding, operations, palliative chemotherapy)

This form should be coloured and put prominently in the patient’s notes. A wrist band to ‘Allow a Natural Death’ (AND) should be worn to alert ambulance staff to look in the notes, following a crisis call out. Unless specified in writing DO NOT in this way, staff are trained to do these interventions automatically, which may be contra-indicated, expensive, futile, and prevent the patient dying at peace where they want.

Families expect doctors to be open with them about when the patient is dying, so death is not a surprise. I accept that it is hard for doctors to say to patients: ‘you are going to die’, ‘where do you want to die?’ or ‘we can’t afford to let you die in hospital, so we’re sending you home to die.’ It is easier for doctors to raise these issues if they are contained in an advance decision form that they can give to the patient and relatives, which opens up these issues for discussion.

The Mental Capacity Act has paved the way for such a form. At present, you are advised to employ a solicitor, and pay a hefty fee (£50-100) which is a strong disincentive. Advance Decision forms for end of life care’ should be made freely available on the NHS as standard stationery.

A draft of such a form is given in the appendix. It gives a warning to patients and their families of the consequences of dying in hospital, and empowers them to specify their end of life wishes. If they want to die at home, they can say so, when the necessary support can be planned for the carer. When I raised this issue in a Department of Health conference recently, a nurse supported me, saying that this is common practice in USA and Canada.

10 Conclusion
Everything in society and the NHS is planned except death. Death is still a taboo subject, even in the NHS, and is bedeviled with limiting beliefs. In the NHS death is regarded as a failure. While it is right that doctors should try to prolong life, it is not right to commission desperate measures to do so at any cost. Nobody needs a doctor more than when they are dying, but that doctor should be their GP, not a multidisciplinary team that they get in hospital. This paper seeks to restore the GP doctor as teacher to the dying patient at the end of life, so that he has a good death, and the relatives and friends get their grieving off to a good start.

11 Recommendations
This paper calls on BHC PCT and BSUHT to make Brighton and Hove a pilot beacon centre of excellence by:
f)       adopting a target of reducing the number of deaths in hospital by a factor of three
g)       reclassifying those who are dying in hospital as bedblockers
h)       eliminating the hidden subsidy by invoicing the PCT with the cost of dying bedblockers
i)       warning the relatives of those dying in hospital that they will lose control of the body
j)       inviting terminally ill patients to sign an advance decision form specifying where they wish to die, and the interventions to prolong their lives to which they DO NOT give consent.

12 Author
John nursed his first wife Janet through her colon cancer journey from Nov 1997 to May 2000. She had private health insurance and obtained the best of conventional treatment (right hemicolectomy) and also the best complementary therapy. She went twice to the Bristol Cancer Help Centre, and both studied their videos and books. After being diagnosed terminal in Jan 2000 she had both a NHS GP and a private GP, and a holistic consultant in Leicestershire. She had a good death at home with her family.

In Nov 2002 John and his second wife Phoebe Wyss founded Planet Janet, organic vegetarian café and complementary health centre, opposite Hove town hall. He studied meditation and now leads it 3 times per week there. He has done over 200 days of alternative (Osho) group therapies, He has also qualified in Dr Rosy Daniel’s Health Creation mentoring course, the Janki Foundations Values in Healthcare training as a facilitator, the PCTs Health Trainer course, the Expert Patient Programme, the training as a facilitator of family constellation group therapy.

APPENDIX Example of Advance Decision form, to be given the terminally ill, and to patients in hospital.who are at high risk of dying.

To be placed prominently in the notes

Disclaimer concerning admission to hospital.
The purpose of admission to hospital is to improve your condition and discharge you. Hospital is not intended as a place for you to die in, as it is not a hospice. We warn you and your family and friends that if you do die in hospital, our staff are required by law to follow legal procedures which may delay or prevent your family and friends from viewing or taking charge of your body, and grieving over it as they would otherwise have done if you had died at home.

Our staff are trained to do interventions intended to prolong your life. They will automatically perform them unless you specifically express a wish to the contrary in writing, that you DO NOT consent to them. Please indicate your end of life wishes below by deleting what does not apply, and inform you family and close friends of your decisions, so that they can support you.

I,.........................................................(name of patient) ……………………………….dob

of .............................................................................................................................

whilst in sound mind, declare that my wishes concerning my end of life care are as follows

1 If in hospital, discharge me as soon as possible so that I can die a natural death at home.

2 If I lose consciousness Do Not Attempt Resuscitation (DNAR),

3 If I get an infection do not give me antibiotics.

4 If I stop eating do not feed me intravenously.

5 If I stop breathing do not put me on a ventilator .

6 I wish to wear a wrist band stating ‘Allow a Natural Death (AND)’ so that everybody knows my wishes

7 In the event of losing capacity to make decisions for myself, I give power of attorney


7 My next of kin

is .......................................................................of.....................................................................

Signed by the said patient............................................................... on

in the presence of .....................................................................................(witness name)


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