Introduction

Palliative care:

No single sphere of concern is adequate without considering the relationship with the other two. This usually requires genuine interdisciplinary collaboration.³

General palliative care is provided by the usual professional carers of the patient and family with low to moderate complexity of palliative care need. Palliative care is a vital and integral part of their routine clinical practice which is underpinned by the following principles:

These services are provided for patients and their families with moderate to high complexity of palliative care need. The core service components are provided by a range of NHS, voluntary and independent providers staffed by a multidisciplinary team whose core work is palliative care.²

Supportive care for cancer is that which helps the patient and their family to cope with the disease and its treatment—from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximize the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment. This definition can be applied equally to non-cancer diagnoses.

The principles that underpin supportive and palliative care are broadly the same.

Hospice and hospice care refer to a philosophy of care rather than a specific building or service, and may encompass a programme of care and array of skills deliverable in a wide range of settings.

This is an important part of palliative care and usually refers to the management of patients during their last few days, weeks or months of life from a point at which it becomes clear that the patient is in a progressive state of decline. However, end-of-life care may require consideration much nearer the beginning of the illness trajectory of many chronic, incurable non-cancer diseases.

The specialty of palliative medicine as a specific entity dates from the mid-1980s. However, medical activity related to terminal care, care of the dying, hospice care and end-stage cancer is, of course, as old as medical practice itself.⁴ Palliative medicine is the medical component of what has become known as palliative care.

The history of the hospice movement during the nineteenth and twentieth centuries demonstrates the innovations of several charismatic leaders. These practitioners were enthusiasts for their own particular contribution to care of the dying, and they were also the teachers of the next generation of palliative physicians. Although they were products of their original background and training, they all shared the vision of regarding patients who happened to be dying as ‘whole people’. They naturally brought their own approaches from specific disciplines of pharmacology, oncology, surgery, anaesthetics or general practice. This whole person attitude has been labelled as ‘holistic care’. Comfort and freedom from pain and distress were of equal importance to diagnostic acumen and cure. However, rather than being a completely new philosophy of care, palliative medicine can be regarded more as a codification of existing practices from past generations.

Histories of the development of palliative medicine illustrate the thread of ideas from figures such as Snow, who developed the Brompton Cocktail in the 1890s, to Barrett who developed the regular giving of oral morphine to the dying at St Luke’s, West London, to Saunders who expanded these ideas at St Joseph’s and St Christopher’s Hospices. Worcester, in Boston, was promoting the multidisciplinary care of whole patients in lectures to medical students at a time when intense disease specialization was very much the fashion as it was yielding great therapeutic advances.⁵ Winner and Amulree, in the UK in the 1960s, were promoting whole person care particularly for the elderly, first challenging and then re-establishing the ethical basis for palliative medicine.

The early hospice movement was primarily concerned with the care of patients with cancer who, in the surge of post-war medical innovation, had missed out on the windfall of the new confident and increasingly optimistic medical world.

That this movement was responding to a need perceived across the world, has been evidenced by the exponential growth in palliative care services throughout the UK and across the globe since the opening of St Christopher’s Hospice in south-east London in 1967.

The expansion is set to increase further, as the point has now been reached where patients, doctors and governments alike are calling for the same level of care to be made available to patients suffering from non-malignant conditions as for those with cancer.

If this new challenge is to be met, healthcare professionals from early in their training will need to be exposed to palliative care learning, which can be applied across the range of medical specialties.

The essence of such palliative medicine learning both for generalists and specialists remains that of clinical apprenticeship. Alfred Worcester, in the preface to his lectures, notes that:

The younger members of the profession, although having enormously greater knowledge of the science of medicine, have less acquaintance than many of their elders with the art of medical practice. This like every other art can of course be learned only by imitation, that is, by practice under masters of the art. Primarily, it depends upon devotion to the patient rather than to his disease.⁵

A pessimist sees the difficulty

Winston Churchill

The ways in which hope is spoken about suggests that it is understood to be a fragile but dynamic state. For example, hope:

Hope is closely linked with wants and desires. The phrase ‘Freud had hoped to revisit Paris’ says something about a future oriented desire Freud nurtured when he left Vienna en route to London. The phrase implies an expectation that the desired thing might be achieved. This expectation may itself be realistic or unrealistic, but assessment of what might or might not be realistic depends on one’s perception of reality.

Because hope is future orientated, the question posed by terminal illness may become: ‘What hope can there be if death is this patient’s only and impending future?’

Hope has long been associated with belief.

Now faith is being sure of what we hope for and certain of what we do not see.

The New Testament, Hebrews 11:1

Hope nurtures within it the belief that that which is hoped for has the potential to be realized: a trip to Paris. The dilemma for healthcare professionals is: How can I work with a terminally ill patient in a way that avoids collusion and yet sustains hope? Addressing this question locates healthcare professionals firmly on the terrain of psychospiritual care.

But part of the difficulty in answering this question is in understanding:

Building on a psychiatric description of the defences deployed by patients to shield themselves from the knowledge of imminent death, Rumbold (1986) describes hope developing through ‘three orders’.⁷

Diagnosis of a terminal illness is often met with denial. Symptoms are ignored or interpreted as something other than what they are said to be. Denial serves to protect the person from the reality of their condition, but it also prevents them from accepting treatment. However, as symptoms progress the fantasy sustaining denial breaks down, and acceptance generates hope that, either recovery may be possible, or that at least death may be long delayed. Rumbold suggests hope may emerge:

(The transition is delicate, and admitting illness may actually plunge patients into a despair and resignation from which they do not emerge.)

Hope for recovery, paradoxically, supports a higher level of denial, which is actively supported by medical staff and by family and friends. Whereas denial of symptoms keeps the person from becoming a patient, the denial of possibilities other than recovery ‘gives medical access to the symptoms while suppressing fear of death and the difficult questions which attend that fear’.

Yet, for hope to continue developing and become hope beyond mere insistence on recovery, patients need to face and explore the possibilities for dying. The social support that once buoyed hope of recovery now works against patients contemplating dying as part of their hope. And lack of support at this point can mean that the acceptance emerging in the patient as this denial breaks down results in resignation and despair; ‘for the withdrawal of community is particularly destructive of hope.’

The breakdown of this denial of non-recovery is a critical transition: ‘If all our hope has been invested in recovery, then that hope may virtually be destroyed by the new perception of second-order acceptance.’

Hope beyond recovery is a more varied hope than the single-minded hope for recovery, the patient may simply hope:

Most terminally-ill people do seem to reach this second stage where such a hope becomes possible; but those who can find a meaningful hope which they are allowed to affirm are distressingly few.

Bruce Rumbold, 1986

Hope beyond recovery has the capacity for yet further development:

Such hope may hold to a belief in a life after death, but recognizes this belief as a contingency of faith.

Prior to her first hospice admission, Elaine had been very angry about her illness (second-order denial). Her realization that she didn’t want to die angry broke down her denial, opening new possibilities to her.

Elaine:  I was angry…very angry–angry at the world; and that’s not me. I’m not like that. I’m usually very calm. That’s not the way I want to be. I think that’s a quite natural reaction, but I don’t want to be angry; I don’t want to die angry…actually, I feel as if I’m moving on from that now. I feel as if I’m moving into trying to make sense of what is ahead.

By allowing her to say and think what she needed to, those around Elaine supported her to explore the possibilities for her dying. When she returned for terminal care she was in a different place spiritually.

Elaine:  It’s that the anger has gone. I’ve worked through a lot of stuff while I was at home. We talked about a lot of things. This is the way it is going to be and there’s no use fighting it. We’d rather things were going to be different, but they’re not. There’s no point in being angry; it takes up so much energy. I know I’m going to be on a gradual, slow decline now, so I have to get on with it. My body is getting weaker, but I feel emotionally stronger. I hope I will.

When healthcare professionals deny the legitimacy of patients’ hopes, they are likely to be expressing their own fears about death and dying.

‘Dignity’ as defined by the Oxford English Dictionary is ‘the state of being worthy of honour or respect’ or ‘high regard or estimation’. The 1984 Universal Declaration of Human Rights and Article 1 of the Charter of Fundamental Rights of the European Union recognize dignity as a human right. The Department of Health in England launched a policy in 2007 to ‘create a zero tolerance of lack of dignity in the care of older people in any setting’. Upholding the dignity of patients within a palliative care setting is essential not only for the patient him/herself but also for the family, particularly in their bereavement.

Patients approaching the end of life fluctuate in their will to live, a situation closely associated with dignity. The meaning and experience of human dignity relates to:

Patients with a terminal illness become vulnerable to a loss of dignity if they begin to feel that they are no longer respected and the person that they once were. As they become increasingly dependent patients often feel that professionals no longer see them as an individual, which can compound a sense of loss of self. Patients may suffer the ultimate indignity of feeling that their life has no worth, meaning or purpose.

A core framework of dignity conserving care has been developed by Chochinov,⁹ with the aim of reminding practitioners about the importance of caring for, as well as caring about, their patients. The mnemonic ABCD stands for Attitude, Behaviour, Compassion and Dialogue.

Professionals need to be respectful in their attitudes towards patients, acknowledging the patient as an individual with cognisance of many issues including culture and ethics. Professionals unwittingly make incorrect assumptions: seeing a patient who has difficulty in communicating does not mean that he/she is not competent to have an opinion about his/her care. The attitude of the professionals to a patient plays a large part in determining the patient’s ongoing sense of worth, a factor which is often underestimated.

An awareness of one’s attitude may lead to a more positive behaviour towards patients. Small acts of kindness and respect boost a patient’s sense of worth. Taking a little time to explain to patients what is happening dispels fear. Practising open and honest communication and giving patients full attention allows them to develop trust, thereby enabling more personal and appropriate care.

Compassion refers to a deep awareness of the suffering of another coupled with the wish to relieve it. Compassion is felt beyond simply intellectual appreciation. Compassion may be inherent in the healthcare provider and hopefully develops over time with both professional and life experience. Demonstrating compassion does not need to take time and can be both verbal and non-verbal.

Healthcare professionals speak to patients about their illness but may fail to touch on the issues that are most important to the patient, such as the emotional impact of the illness and the importance of being recognised as an individual and not another sick person. Healthcare decisions need to be taken considering not only the medical facts but also the life context of the patient. Psychotherapeutic approaches, such as life review or reminiscence, can be used to support patients to regain or retain a sense of meaning, purpose and dignity.

These four facets compromise a framework for upholding, protecting and restoring dignity which embraces the very essence of medicine.

Hercules himself must yield

3 Henry VI (2.1.54–6)

Strengths exist in everyone. Any strength is a pathway to resilience. Even people facing the end of their lives or bereavement can be resilient. The concept of resilience is an approach, philosophy or mind-set which is consistent with the holistic model in palliative care.

Resilience is the ability to thrive in the face of adversity and stress. ‘The capacity to withstand exceptional stress and demands without developing stress-related problems’.¹⁰ People demonstrate resilience when they cope with, adjust to or overcome adversities in ways that promote their functioning. It is a process that allows for some kind of psychological, social, cultural and spiritual development despite demanding circumstances. It is, therefore, important that those involved in delivering palliative care appreciate the nature of resilience and how to enhance it. We should promote methods of enhancing and supporting coping mechanisms with the same vigour applied to assessing risk and defining problems.

Resilience has been described as a ‘universal capacity which allows a person, group or community to prevent, minimise or overcome damaging effects of adversity’.¹¹ It is not just about re-forming but about the possibility of growth. The concept of resilience is important to the future delivery of end-of-life care and the significant challenges it faces. It offers a unifying concept to both retain and sustain some of the most significant understandings of the last four decades of palliative care and to incorporate more effective investment in a community approach and a public health focus, in addition to the direct care of patients and families. This integration is vital if we are to resolve the ever-increasing tension between the rhetoric of choice and equity coupled with the demands of rising healthcare expectations in ageing populations, and the inevitably limited availability of informal and professional carers and financial resources.¹²

‘The capacity of an individual person or a social system to grow or to develop in the face of very difficult circumstances’.¹³ Resilience can be promoted at different levels in:

Each of these components has strengths and resources that can be encouraged and reinforced. It is important to remember that resilience is a dynamic process, not a static state or a quality that people do or do not possess. It can change over time and is a combination of internal and external characteristics in the individual and their social, cultural and physical environment.

Everyone needs opportunities to develop coping skills and it is important that individuals are not excessively sheltered from the situations that provide such challenges. Some of the characteristics of resilience that health professionals can recognize and use to encourage it include:

Even the existence of just one of these features can promote resilience and growth.

Various interventions and tools can promote the process of resilience in clinical practice:

The natural history of disease has been documented over many years. This has become increasingly less relevant as successful therapies have developed. In present day palliative care, prognosis frequently relates to chronic progressive disease in patients with multiple co-morbidities, and not to the recovery prediction of a young adult with an acute illness, as was more common in the nineteenth century.

The reasons for making an attempt at predicting how long a patient with incurable disease might live include:

There is a good literature on the probability of cure for the different cancers.

In palliative care such prognostic indices may not be so relevant.

Factors such as physical dependency (due to e.g. weakness, low blood pressure), cognitive dysfunction, paraneoplastic phenomena (e.g. anorexia–cachexia, cytokine production), certain symptoms (weight loss, anorexia, dysphagia, breathlessness), lymphopenia, poor quality of life and existential factors (either ‘giving up’ or ‘hanging on’ for symbolically important times) may be more important.

Some patients may survive for a long time (months and years) with a seemingly high tumour load, while others succumb within a short time (days) for no obviously identifiable reasons.

Several scores have been developed to aid prediction of survival. The Palliative Prognostic (PaP) score is predictive of short-term survival and summarizes scores for dyspnoea, anorexia, Karnovsky performance status, the clinician’s estimate of survival (in weeks), total white count and percentage of lymphocytes.

Oncologists rely on prognostic assessments in order to predict which patients are likely to benefit from oncological interventions. Many of their decisions are based on the patient’s functional status.

Patients with an ECOG score greater than two are usually deemed unsuitable for most chemotherapy interventions.

Predicting prognosis in patients with a non-cancer diagnosis is very difficult. These patients often remain relatively stable, albeit at a low level, only to deteriorate acutely and unpredictably. They are usually then treated acutely in hospital, and the disease course may consist of acute exacerbations from which recovery may take place.

One study showed that even during the last 2–3 days of life patients with congestive heart failure (CHF) or COPD were given an 80% and 50% chance, respectively, of living six months.

There are, however, general and specific indicators of the terminal stage approaching.

Those predicting poorer prognosis include reduced performance status, impaired nutritional status (greater than 10% weight loss over six months) and a low albumin.

Prognostication is a notoriously difficult task to perform accurately. The world abounds with stories of patients who have been told by their physicians that they have only a matter of months to live who twenty years later can recount in vivid detail the day they were given the news.

One of the reasons that prognostication is so difficult is that it is fraught with uncertainty and also with opportunities for misunderstandings between doctors and patients, who often have very different agendas as to what they want to get out of the interview.

Mr. Jones listened carefully as the consultant went into great detail about the nature and the extensive spread of his metastatic prostate tumour. The explanations were detailed and scientific and long. Eventually the consultant stopped. ‘Now Mr. Jones, do you have any more questions?’

‘Well, I didn’t like to interrupt you but I was only asking how long I had before I needed to go down to get my X-ray.’

Over the past 20 years there has been a huge shift in attitudes regarding disclosure of information to patients, and a culture of complete disclosure has now become the norm. Yet prognostication does not just involve passing on clinical details and predictions of disease progression; it also involves assessing:

To pass on facts without regard for the implications of those facts is to increase the risk of dysfunctional communication taking place. ( see Chapter 2.)

While doctors are used to describing risk in terms of percentages, when such percentages are measuring out your own longevity it is hard to translate the mathematical chances into personal experience.

A doctor may feel that he has provided the patient with the clear facts when he states that in 100 patients with the particular malignancy, 36 will be alive after five years following treatment. Such sentences can be easily misunderstood, and the patient may hear something very different from what the doctor is saying.

Doctors are also particularly vulnerable to miscommunication at the time of passing on prognostic information.

Prognostic information can be extremely important to patients as it allows them to focus on tasks and goals which they want to achieve before their disease takes over: communicating such information effectively is a skill which all healthcare professionals should covet.