Advanced Heart Failure
The final item of business is a members' business debate on motion S3M-2137, in the name of Michael McMahon, on living and dying with advanced heart failure. The debate will be concluded without any question being put.
Motion debated,
That the Parliament welcomes the publication of Living and dying with advanced heart failure: a palliative care approach, by the Scottish Partnership for Palliative Care with the support of British Heart Foundation Scotland and the Scottish Government; notes that people with heart failure have a worse prognosis and poorer quality of life than many cancer patients and that 50% of advanced heart failure patients die within a year of diagnosis, many of them suddenly and unexpectedly, particularly in the west of Scotland; believes that uncertainty around prognosis should not be a barrier to people with advanced heart failure, or those with any other condition, receiving appropriate palliative care; is concerned that, despite the recommendations of the CHD and Stroke Task Force in 2001 that provision needed to be made for palliative care for advanced heart failure, too many of these vulnerable patients are still not getting the care they need at the time that they need it most, and believes that account should be taken of the report's recommendations and that the needs of patients with conditions other than cancer, like advanced heart failure, should be explicitly addressed in the forthcoming palliative care strategy and the refreshed CHD and Stroke Strategy.
Few people would disagree with the view that all patients who are reaching the end of their lives and who require a palliative approach to treatment should be able to get it regardless of their condition. That seems to me a fundamental human right. However, the unfortunate reality is that, for many conditions, especially non-cancer ones such as lymphoedema or Parkinson's disease, palliative care services are limited and do not reach many of the people who need them the most. My motion focuses on advanced heart failure, which fares particularly poorly in relation to palliative care services.
Premature mortality from heart disease has fallen significantly in the past 10 years. That is great news, which shows the impact that improved lifestyles, combined with new technological developments and well-organised national health service services, can have. However, one consequence of the decrease in premature mortality from heart disease and the fact that we have an ageing population is that more people than ever before are living with conditions such as heart failure. There are at least 5,500 to 6,000 new cases of heart failure each year in Scotland, but few of those patients receive adequate palliative care support.
There is a lot of misunderstanding about what heart failure is, so it is important to say a little about that. Advanced heart failure is a debilitating and life-threatening condition for which there is no cure. Just like any other muscle, the heart can be damaged by trauma such as that which is sustained during a heart attack. Heart failure is the term for when the heart is damaged to the extent that it cannot pump blood round the body properly. Heart failure patients often have distressing symptoms and a worse prognosis and quality of life than many cancer patients. Some patients say that the condition makes them feel as if they are drowning.
Studies have shown that heart failure is associated with worse long-term survival rates than bowel cancer in men and breast cancer in women. Half of patients with advanced heart failure die within a year of diagnosis and half of the remainder die within five years. In all settings, a significant issue is that many patients with advanced heart failure die suddenly and without having discussed their wishes and needs, as often they have not been advised that their condition is fatal.
Heart failure needs to be embedded in all initiatives for patients with chronic conditions. Advance care planning for all those with life-limiting illnesses is imperative in all care settings, and closer, collaborative approaches to planning a patient's journey result in care that is appropriate to the stages of their illness. Despite symptoms that are highly distressing for patients and carers, the vast majority of advanced heart failure patients do not get access to palliative care, partly because the likelihood of sudden death makes it difficult to predict individual prognosis.
Before the summer recess, the cross-party group in the Scottish Parliament on palliative care discussed the contents of the Scottish Partnership for Palliative Care report "Living and dying with advanced heart failure: a palliative care approach", which was part-funded by the British Heart Foundation Scotland. One question that emerged was why the palliative care needs of patients with advanced heart failure were often neglected. One reason was health professionals' uncertainty about the condition, especially with regard to the point at which a patient enters the terminal phase. The fact that that point is much more difficult to predict for heart failure patients than it is for those with other conditions, especially cancer, can leave health professionals unwilling to enter into the discussions with patients that are needed at the end-of-life stage. As in many other areas of health care, good communication is absolutely critical.
Another reason why so few advanced heart failure patients get palliative care is that services have traditionally focused on cancer patients' needs. However, that expertise can be used to develop appropriate services for end-of-life care for non-cancer conditions. There are some great examples of such work already, especially in the voluntary sector.
Indeed, as convener of the cross party group on palliative care, I have been made aware of the fantastic proposal by the British Heart Foundation and Marie Curie Cancer Care to establish a centre of excellence in Glasgow that will provide a comprehensive palliative care service for advanced heart failure patients and their families. The organisations' combined expertise will not only create a gold standard in palliative care for advanced heart failure, but pioneer a model of care for patients in Scotland and throughout the United Kingdom. With Marie Curie's expertise in palliative care working in tandem with the BHF's cardiovascular expertise, that comprehensive service will benefit not only heart failure patients at the end of life but their families, especially in the west of Scotland, where the problem is prevalent.
The Scottish Government has acknowledged that the palliative care needs of patients with conditions other than cancer are not being adequately met. The Scottish intercollegiate guidelines network guideline 95 on heart failure specifically recommended that a palliative approach be adopted at the early stage of the disease and the recent consultation that was published on the coronary heart disease and stroke strategy has stated that the palliative care needs of advanced heart failure patients still require attention. As a result, I warmly welcome the new palliative care strategy, especially the ring-fenced £3 million of annual funding.
New approaches to palliative care will need to link up with established managed clinical networks, particularly those that work well for coronary heart disease and stroke services. Such an approach will permit continuity of care with, for example, the specialist heart failure nurses funded by the BHF, who are already working with many of these patients in every health board area. However, as the Royal College of Nursing has pointed out, that will pose a real challenge to the commitment of health boards and services in community, acute and care home settings to release staff for training. Although the University of the West of Scotland provides nurse education for most of the health board areas in the west of the country, shortages in the clinical area mean that nurses cannot be released for education and, as a result, many classes lie half empty.
I welcome the focus on non-cancer conditions, particularly organ failure, and the approach to care that is person centred and based on patient and carer needs rather than on diagnosis or prognosis. It is crucial that we maintain that focus, because there is a danger that the new money could be diverted into cancer-specific services, where pathways are well established, when the most urgent and pressing need is a focus on non-cancer conditions such as advanced heart failure.
If ever there was an issue on which there should be a consensus across the political divide, it is this one. I hope that we all agree on one simple point: regardless of the diagnosis, everyone who needs palliative care should get it.
I whole-heartedly congratulate Michael McMahon on securing this important debate.
Although heart failure is a common clinical syndrome, especially in elderly people, a diagnosis is often missed. A detailed clinical history is crucial and should address not just signs and symptoms of current heart failure but signs that point to a cause of heart failure, such as coronary artery disease, hypertension or valvular heart disease.
It is estimated that heart failure affects 60,000 people in Scotland and that there are some 7,000 new cases each year. The syndrome is a frequent cause of hospitalisation among the elderly and is responsible for between 5 and 10 per cent of all hospital admissions.
The clinical syndrome of heart failure manifests when cellular respiration becomes impaired because the heart cannot pump enough blood to support the metabolic demands of the body or when normal cellular respiration can be maintained only with an elevated left ventricular filling pressure.
There are many approaches to the evaluation and medical treatment of heart failure. Treatment options include investigative drugs and devices, cardiac resynchronisation therapy using bi-ventricular pacemakers, implantable cardioverter defibrillators and cardiac transplantation.
However, there are issues to do with palliative care, as Michael McMahon said. Heart failure produces greater suffering and is associated with a worse prognosis than is the case with many cancers, but patients with heart failure find that little time is given to considering their quality of life. Palliative care for heart disease sufferers is an essential element of a holistic approach. We need to ensure that patients with heart failure are treated no worse than, and are given the same priority as, patients with cancer.
All patients with heart failure live with uncertainty and the possibility of sudden death. The opportunity to discuss such issues should be available at all stages of care. Communication about heart failure can be even more complicated than communication about cancer, because most people with heart failure do not understand the causes or prognosis of the disease and rarely discuss end-of-life issues with their professional carers. Heart failure nurses need advanced communication skills training, because they have to communicate complex and distressing information. They also need the skill to judge how much information a patient wants and how to discuss sensitively end-of-life issues and patient care requirements. A study concluded:
"Patients with cardiac failure rarely recalled being given any written information, had a poor understanding of their condition, and, in the absence of chest pain, did not connect symptoms like breathlessness and oedema to their heart."
British and North American studies of patients with heart failure showed that patients' levels of psychological distress are comparable with those of patients with cancer. In one study, major depression was identified in 26 per cent of patients and minor depression in 32 per cent of patients. Another study showed that depression about heart failure was associated with a mortality rate that was two and a half times higher, and admission levels after one year that were three times higher, than was the case for patients who were not depressed.
General practitioners, cardiologists and other physicians play an important role in the assessment of psychological needs and the referral of patients and carers. They also have an important role in the prescription of appropriate antidepressant measures.
Palliative care involves the assessment of support needs of patients and carers, information for patients, co-ordination in and out of hours and across boundaries, basic levels of symptom control and open and sensitive communication. Patients with heart failure and their carers should have access to professionals in the heart failure team who have palliative care skills. Suboptimal care of the dying is thought to be due to the failure of staff to recognise or acknowledge impending death. It is also thought to be due to the lack of education and training on care of the dying. In heart failure, the dying phase is known to be difficult to recognise.
In 2004, the World Health Organization published guidance on the expansion of palliative care services. In its report, the WHO said:
"It is unrealistic to expect the wider emerging needs for palliative care to be met by expanding the workforce of specialists in palliative care. It is more likely that a solution will be found by expanding the knowledge and skills of health professionals generally."
There is a role for specialist care. However, it is important that more professional health care workers, social workers, benefits advisers and people who support carers should be able to provide sympathetic support to patients who suffer from heart failure, which will affect many people in Scotland in the months and years to come.
As the convener of the cross-party group on palliative care, Michael McMahon has been a tireless campaigner for improved palliative care services in Scotland since 1999, and I welcome this debate on advanced heart failure and the equality of care that he seeks.
Before the debate, I looked through "Living and dying with advanced heart failure: a palliative care approach", which was published in March, and at the more recent action plan for palliative care and end-of-life care, "Living and Dying Well". On behalf of the Scottish Conservatives, I hope that the recommendations in the earlier report, which focused on advanced heart failure, are included in the September report. I also hope that the debate will bring clarity to the issues, as is requested in the motion.
Henry Dargie, the director of the Scottish advanced heart failure service, stated:
"Patients admitted to our hospitals with worsening heart failure still stand only a 60 per cent chance of being alive one year later".
Compared with many cancer patients, those with heart failure have a worse prognosis, poorer quality of life and more limited access to social services and palliative care support. That is worrying, particularly given the number of patients involved.
I welcome the recommendation on when palliative care should be introduced. That is a key component. It is referred to in the third section of the report on advanced heart failure, and the severe symptoms are listed in the briefing from the British Heart Foundation. There is no doubt that palliative care used to focus mainly on end-of-life care, but in recent years it has broadened to include the time from diagnosis of a life-limiting condition.
Given that advanced heart failure is defined as the presence of severe symptoms and poor exercise tolerance and given that patients face recurrent episodes of hospitalisation, usually caused by worsening heart failure and its complications or by problems relating to medication or co-morbidity, I will speak about the Nairn anticipatory care project, which included patients with advanced heart failure.
The Scottish Government's "Better Health, Better Care" action plan highlights the need for a greater emphasis on anticipatory, rather than reactive, care to meet the challenges in shifting the balance of care. The Nairn project developed a local case-finder tool that did not require a previous hospital admission, so it identified patients before they were referred or admitted to the hospital system. It then targeted interventions to the patients who were at highest risk of hospital admission. The project also assessed local nursing and residential home patients. The toolkit consisted of a screening tool, a patient leaflet, an anticipatory care plan, identification of at-risk patients, evaluation forms and a web link to patient administration information. The project was able to call on the primary care team, including occupational therapists, physiotherapists, community nurses and health care assistants.
The evaluation conducted by the University of Stirling concluded that the reduction in bed day rates from admission rates was 61 per cent, and that the length of stay reduced by 39 per cent. That also reflected a transfer from Raigmore to the local community hospital in Nairn.
Although no attempt has been made to calculate the financial impact of the intervention or the net investment required to roll it out across the Highlands, we know that hospital bed days for the population in question are projected to increase. With the anticipatory care intervention, which allows people to stay in their own homes, hospital bed days are significantly reduced and there is better anticipatory, rather than reactive, care.
I raise awareness of the project as I feel that it is a uniquely patient-led service and that there is an opportunity in the model to include palliative care and the voluntary sector as appropriate. I hope that it will be considered with the other measures.
I add my congratulations to Michael McMahon and acknowledge his long-term interest in heart failure.
Until now, palliative care has largely applied to cancer patients. The hospice movement took off in the 1970s, first with in-patient care, then with day care and finally with outreach, and it has radically changed the approach to the management of cancer care over the past 30 years. In my area—Forth Valley—that change included the appointment of an individual from a hospice whose job was to go round primary care units and assess their capacity and desire to be involved in the palliative care of their patients so that the hospice, the hospital and the primary care unit provided complementary services that were balanced according to the ability of each to provide the service and according to the needs of the individual patient.
That, of course, is a vertically integrated managed network, which is what is needed for heart failure patients as well as other groups. Indeed, it could be expanded to many other groups—we have had correspondence on the motion from the Parkinson's Disease Society of the United Kingdom and other neuromuscular disorder groups. However, tonight we are talking about heart failure.
Heart failure has been underdiagnosed and usually significantly undermanaged. The amount of specialist care has been limited. As Mary Scanlon, who illustrated what needs to be done, said eloquently, the problem is that care has been largely reactive. We still need reactive care, and it is important that "Living and Dying Well" and other recent announcements mention the use of measures such as living care plans, living wills and electronic care plans, which can be transmitted to the other services that may be involved—such as NHS 24 or the specialist care hospital units—so that people are all singing from the same sheet.
One of the major problems that we face in the health service—this applies generally—is how to transmit appropriate information so that patients do not have to repeat it all the time. If a patient who has a chronic condition that is not life threatening goes into hospital, they might not mind repeating all the information that they have previously given, but uncertainty is an acute fact in heart failure, because patients tend to die suddenly and unexpectedly when we think things are going well. To prevent that in an acute situation, it is imperative that the appropriate information is available to the people who are looking after them, whether that is NHS 24 or a specialist care unit.
Patients with brittle asthma—very acute asthma—face the same sort of uncertainty, as an attack might mean death and almost certainly means admission. In Forth Valley, we established direct links between such patients and the hospital ward. They did not have to go through NHS 24 or any practice; they phoned the unit and were admitted immediately. That would be appropriate for some patients with advanced heart failure.
Kenneth Gibson referred to the sensitive sharing of information. That is fundamental. It is important that the staff are well trained, understand the condition and know what they are dealing with. Having specialist nurses support generic community nurses provides that possibility for key workers—close support from the community nurse backed up by the specialist nurse.
How information is shared and at what point will depend upon the family and the individual. Those two do not always coincide, because patients with heart failure may well be in denial just as cancer patients can be. In fact, one of the hardest cases I had was a patient whom I tried to persuade that his condition was so serious that he required a heart transplant. We got him to the hospital and began to get the transplant organised but, having accepted it, he went back into denial. Movement in and out of denial is a problem. The distress that it caused that man's family was enormous and, I am sad to say, he died without getting his transplant because he would not accept that he needed that treatment.
The topic is important not only for its own sake, but in the context of "Living and Dying Well". We have moved a long way as a community, but a recent survey suggested that 70 per cent of Scots feel that we still do not discuss death enough. Although the movement has been significant, we have some way to go. Heart failure should be one of the issues to which quality and outcomes framework targets apply; I do not know whether it is, although the matter has been discussed. There should be local enhanced service contracts with practices that are able to provide enhanced, more specialist services, which should be supported.
I thank Michael McMahon for securing this debate. I welcome the funding moves that the Government has already made in recognition of the Audit Scotland review of palliative care services, which we do not have time to go into today, but much more needs to be done.
We all owe Michael McMahon special thanks for securing a debate on an important subject that does not get as much attention as it deserves. I strongly support the motion and pay tribute to Marie Curie Cancer Care, the British Heart Foundation and others in this important area for the work that they have done.
At the moment, probably about 100,000 people in Scotland are living with a diagnosis of heart failure. With people living longer, the prevalence of heart failure is set to increase markedly, so it is a matter of concern that we are not doing well even now for people who have advanced heart failure. The Scottish audit of surgical mortality raised that issue at least 10 years ago. In a series of reports, it drew attention to the plight of people with end-stage heart failure who were dying in acute hospitals and had a worse prognosis and poorer quality of life than many patients with cancer. To make their situation even worse, those people and their families had no access to the benefits of palliative care.
SASM's work was taken up by the CHD and stroke task force in its report of 2001. The CHD and stroke strategy that was published the following year noted that the Scottish Partnership for Palliative Care had set up a working group to address the issue of ensuring that people with end-stage heart failure had access to palliative care.
The Scottish Government and its predecessors have made clear that we want to move beyond the traditional association between palliative care and cancer. We firmly believe that palliative care, both general and specialist, should be available to anyone suffering from a progressive, incurable condition. As the motion says,
"uncertainty around prognosis should not be a barrier to people with advanced heart failure"
getting appropriate palliative care. We are now well placed to heed that call.
The report "Living and dying with advanced heart failure: a palliative care approach" was published by the Scottish Partnership for Palliative Care and the British Heart Foundation Scotland in March. I record my thanks to both organisations for the work that they put into it. The report's recommendations set out a clear way ahead. As the motion mentions, that is recognised in the consultation on our revised CHD and stroke strategy.
That work is supported by SIGN guideline 95, on the management of chronic heart failure, which contains a valuable section on palliative care. The key recommendation is that a palliative care approach should be adopted in the early stages of chronic heart failure by all clinicians who are managing people with the disease. The introduction of palliative care from the time of diagnosis, not just in the final stages of the illness, is especially important in the context of heart failure, given the uncertainties about the course of the condition and the ever-present risk of sudden death, to which members have referred.
NHS Quality Improvement Scotland is considering how best to implement the recommendations in the SIGN guideline. I hope that the clinical standards on heart disease that NHS QIS is developing will include a standard dealing with palliative care for people with heart failure.
Work on broadening the availability of palliative care beyond cancer has also been boosted by the Audit Scotland review of palliative care services. The section of its report that reflects the views of patients contains some quotes that make clear the importance that people attach to the role of the heart failure specialist nurse. That echoes a finding of recent research by the British Heart Foundation. Having one person with whom they can build up a relationship of trust and understanding bolsters people's confidence in being able to cope with their condition. The voluntary sector has made a hugely important contribution to the provision of heart failure specialist nurses.
The number of such nurses has grown considerably in response to the growing evidence that their intervention not only improves quality of life but reduces admissions to hospital, and possibly even mortality rates. The Scottish heart failure specialist nurses forum plays an important part in developing nurses' role. It has highlighted the importance of integration with other services, such as palliative care, including the need to develop formal protocols for referral.
On palliative care more generally, we have just published our national plan for palliative and end-of-life care in Scotland, "Living and Dying Well", to which members have referred. The thinking in that action plan and the additional investment that we are making available will create a positive context in which to take forward the work on palliative care for end-stage heart failure.
Approaches such as the introduction of the Liverpool care pathway for the dying patient have been developed to transfer the hospice model of care into other care settings. I hope that its wider adoption will help to ease the plight of those with end-stage heart failure who die in acute hospitals.
Michael McMahon raised the issue of nurses not being released for palliative care education. The action plan recognises the importance of education, training and workforce development. I believe that implementation of the plan will address Michael McMahon's concerns. NHS Education for Scotland and the Scottish Government will work to develop an educational infrastructure for palliative care.
I say to Mary Scanlon that the Nairn anticipatory care project, which she highlighted in her speech, is included in "Living and Dying Well" as an example of good practice.
Our general work on long-term conditions is providing a favourable climate. "Living and dying with advanced heart failure" tells us that people with heart failure and their carers feel uninformed about their condition, feel excluded from decision making and feel that control of their lives is taken away from them. That could not be in greater contrast to the approach that we are trying to encourage.
I assure members that the revised CHD and stroke strategy will, as the motion requests, seek to pull together all the initiatives that I have mentioned. In our managed clinical networks for cardiac services and palliative care, we have the best possible vehicles for taking forward that important and long-overdue work. I hope that Michael McMahon and others are reassured by that commitment. I am happy to keep them informed of progress.
Meeting closed at 17:33.