Response from Scotland Patients Association to the Health and Sport Committee

The Palliative Care (Scotland) Bill

31 August 2010

Scotland Patients Association thanks the above committee for the invitation to respond to this Bill.We believe that palliative care at best should be a seamless progression of care and treatment of any illness for which there is no cure. (See definition below.)

The answers to your questions are:-

Do you agree with the general principles of the Bill?

Yes, we agree with the general principles.

Do you believe there should be a specific duty on provision of palliative care in the NHS (Scotland) Act 1978, over and above the general duty of “providing a comprehensive and integrated health service”?

Yes, we do agree because many changes have taken place over many years within the NHS which have altered the way the NHS works and is managed. Most likely as an unintended consequence of the latter, continuity of care has been compromised and possibly clinical judgement when targets have to be met when beds of all kinds are in short supply.

Patients are frequently moved around within an NHS ward, between wards and hospitals, discharged as soon as possible into the community and may have to have repeated admissions to hospital, from the community, for the same illness for which there is treatment but no cure. Death is not always soon after a diagnosis but it is possible that the diagnosis of a terminal illness is achieved almost within a few weeks of death and essential palliative care should be on offer and available in the hospital setting, at home with the general practitioner and the community team, in a care home or in a hospice.

All health professionals should be able to move swiftly when palliative care is required.  Flexibility is essential between community cares, hospitals or hospice care should patients requirements change at short notice. Do we have enough hospice beds to cope with the future demands with the predicted ageing population, living longer, with more complex treatable conditions?  Little time may be available for all the information and help to be on offer for the patient and their family to enable them to come to terms with the severity of the diagnosis of an illness and the brief time to set their affairs in order and to say their goodbyes.

If people are to have a good death and end of life experience  the  patient and the family need worry  to be removed  from how to nurse and care for this person   and  have that essential quality time.   This is the time the   health professionals need to be able to move in fast  and  give confidence to the patient and family  so that they are there to relieve the strain and the burden of “what do we do and how do we cope?”   When income needs to be maintained to pay bills (MacMillan Nurses provide comprehensive information on benefits etc.).
Scotland Patients Association has had three examples in the past six months which illustrate to us that end of life care is to say variable in Scotland and sometimes perceived as non – existent. For this reason this is why we need this bill to concentrate the minds of health professions to be ever mindful of who may require palliative care and when.

Example 1. A person who has Power of Attorney has recently felt compelled to remove an elderly patient from an NHS general hospital and has elected to transfer this patient to a private care home because general nursing care and feeding were in question. It is their perception end of life care is poor. Poor communication by health professionals and in addition a lack of understanding of the status of a person holding the Power of Attorney is contributory factors.

Example 2. An elderly gentleman was admitted with a stroke.  NHS professionals decided that the three hours had passed for intervention with a clot busting drug so deterioration of the said patient was observed by NHS staff though not accepted by the family. The family wished more understanding of why medications were given and for what reasons. It was made clear to the family that there was no betterment for this gentleman and that they had to accept he was dying.  It was decided by the health professionals that the patient should be put on the Liverpool Care Pathway and given a single room.  Some drugs were stopped by request and by accident and the patient woke up.We met with a very well recovered patient after this extreme event.  He   believed, along with his family to have been inappropriately, diagnosed and treated and could have died if the family had not intervened.

Example 3. A gentleman suffering from a brain tumour and known to be on an accepted pathway of treatment which was for symptoms, not of cure, required to be admitted to an A&E department.  Information was obtained about present treatment and drugs from the Beatson Cancer Centre and appropriately taken into consideration. The patient then had to be transferred out of A&E to another ward where it was decided to stop all treatment which was previously agreed by the Beatson and confirmed by the A&E department.  His wife explained that his pain and discomfort became unbearable for him and family observing and it was only after strong words between his wife and his professionals that the Beatson was contacted once again by the consultant on this ward who was given the same advice as was given when the patient was in A&E.  Lack of communication and understanding made the last hours of this patient’s life, and hence that of his family’s, a very bad experience and left an exceedingly ugly haunting memory of his death.

The above three examples were given to us about people who have been or are being treated within different health board areas in Scotland.
The NHS was devised to deliver care from the cradle to the grave and therefore it could be assumed therefore that it should be “providing a comprehensive and integrated health service” but unless palliative care is underlined by the new Bill then palliative care may fall through the gaps in an NHS service which has fractured continuity of care and sometimes none.

Do you have any comments on the provisions concerning reporting and indicators contained in the bill?

As with all legislation, measurements should be made to assess improvements as a result of the Bill. It is always good to compare the previous situation and any existing statistics.
In order to be sure that  palliative care is available to all patients and their nearest relatives and closest relationships there has to be an indicator that it is offered to all. Information should be given to people who may not appear to be in immediate need but it should be recorded it was offered and why it may have been refused.

There should be information of how many hospice beds are available now and how many will be required for future population needs.
There will need to be ongoing training for all health professionals and training for more consultant specialists in palliative care. Essentially everyone who is caring for a patient including the family should be encompassed in training, to enable the best of team work which will offer the best care.

We have found that power of attorney appears not to be understood in hospitals and the care home settings so a great deal of training is required so that the patients wishes are carried out by the person or persons  legally selected by them.

Palliative care in the home or in a care home setting will need more general practitioners, district nurses and health visitors as well as care assistants. Experience and training is beneficial for all.

Some assessment   of the standard of palliative care given during and after death should be made so that we can learn from experience. All health professionals and relatives of the patient should contribute.

How many people have been selected to be on the Liverpool Care Pathway and is this number increasing and why? What checks and balances have been put in place to safeguard against   hasty decisions?

Training in improving continuity of care throughout all the NHS is important for palliative care to work. For example if someone is allowed home to die all that is required to allow this to happen in coordinating apparatus such as beds, commodes etc., as well as the  trained  and experienced health care professionals, should be available quickly with someone delegated as the  responsible coordinator for each patient in the community or hospital. It is easier for relatives to contact one person for information regarding appliances and one contact for clinical matters.

It is also important to know how early palliative care was on offer after diagnosis, and prior to death, and how that need was followed up and when installed.Early diagnosis essential for best outcomes of treatment for patients and  is linked with availability of general practitioner and consultant appointments  and availability of  well maintained diagnostic machines such as scanners 24/7.

It would be good to compare the situation prior to the Bill. How many people died in any setting without any palliative care and why?
How many people have been   discharged as no longer needing NHS continuing care yet fall into the definition of requiring palliative care by the WHO definition of Palliative care?How many people discharged from NHS continuing care have been offered palliative care and at what stage was this offered?

How many people in hospital are designated as “do not resuscitate” and why?How many relatives were informed of the decision not to resuscitate and what reasons were given?
What drugs and quantities have been used in end of life care? These should be accurately logged and checked frequently to protect all concerned, not least the patient.

Are you content with the definitions contained in the Bill, particularly “palliative care”?

Yes, we are content with the WHO definition of Palliative which encompasses   care   through   different life spans, which will be individual to each person for a particular condition and in the different ways of care required throughout a lifetime after a diagnosis is made of an illness, from which there is no cure.

Many patients who are said to no longer need NHS continuing care may be appropriate for palliative care by definition.
Most people wish to live as long as possible, without pain and discomfort, and remain conscious, for as long as they can in order to communicate with those people closest to them.  We therefore must be sure that drugs are well monitored close to the patient’s requirements and that close relatives are informed and all their questions are answered.

If the grieving and bereavement process is to be normal then the family need to see that their loved one has a “good death experience”
We are concerned for those patients who do not have any family to look out for them.

Do you have any comment on the costs identified in the financial memorandum?

Considering costs it is cheaper in the long term to work to best practice and to use the most experienced health professionals, in the most appropriate places, where important decisions need to be taken for speed and for accuracy of diagnosis and treatment.  NHS staff is available now but they will need to be increased in numbers because delivering palliative care is labour intensive. Increasing NHS staff will help the whole NHS work better as well as closing the gaps in continuity of care as well as improving palliative care.
If continuity of care can be standardised and improved throughout Scotland’s NHS this would save misery for patients and cost the NHS less by prevention of delayed diagnoses. Early intervention usually produces better outcomes.

Families who have to give up work to care for relatives   can become depressed and may never work again. If so they do not contribute to general taxation.If a family feels that care has not been up to standard and that their relative has had a “bad death” that too can cause depression and add another burden of cost to the NHS.

If the elderly who are living longer with more complex conditions are well looked after and are allowed to retire and do part-time work they are less likely to become a burden to the state. Experienced health professionals who have retired could have their expertise used to great advantage to the NHS, especially in hard financial times.

Why not employ all newly qualified health professionals, for whom there is no fulltime job at present, in special apprentice posts to work alongside experienced health professionals. This will keep their expertise up to date and save them leaving the country or the profession.

There will be costs of gathering information and for training of health professionals as well as the need to increase numbers in the community.
Money will be saved from discontinuing NHS continuing health care but that may be balanced by these patients requiring palliative care.

Hospice beds are very good value for money and are run by charitable trusts to which health boards contribute variable amounts to working costs. It seems strange that hospice care is not a full NHS expense for palliative care in a hospice but could be, or should be if this Bill is accepted.

Government money has been given to Health boards of £1.12 million to aid universal Palliative care; how has that been spent and what are the measured outcomes for patients and families as a result of this expenditure? Variability exists in Scotland comparing Health Boards. Audit Scotland figures for 2006/7 were interesting in that £59 million was spent on specialist palliative care of which £32.8 million was provided through public funding commissioned by hospices.