What ethical issues are healthcare professionals subjected to within palliative care, and how are they managed?

Introduction and definitions

Palliative care is an integral aspect of the work of most healthcare professionals, whatever their particular setting. All should feel confident in the core skills and knowledge of basic physical and non-physical symptom control. Moreover, it is necessary to have a grasp of the communication skills surrounding issues in incurable and advanced illness, and to be able to identify the need for referral to a specialist and other services.Palliative care is not an alternative to other care, but is a complementary and vital part of total patient management:

I need my doctor to explain to me, to be cheerful, to share his experience and guide me, not only in the treatment but with my feelings as well. I need my doctor to discuss the possibility of death, and to find options that are unknown to me, because without him, I dont even know where to look for them. I would also like to feel free to talk to him about trying alternative treatments, without fear of his resentment or contempt that would destroy my hope and enthusiasm, or spoil the relationship.

Much of our understanding and knowledge of the philosophy, science, and art of palliative care has developed and grown through the work of the hospice movement. The word hospice originates from the Latin hospes meaning host; hospitalis, a further derivative, means friendly, a welcome to the stranger. The word hospitium perhaps begins to convey the vital philosophy of the hospice movement: it means the warm feeling between host and guest. Hence a hospice denotes a place where this feeling is experienced, a place of welcome and care for those in need.The word palliative derives from the Latin pallium, a cloak. Palliation means cloaking over, not addressing the underlying cause but ameliorating the effects. The bedrock of the hospice philosophy, in Western society at least, is that of patient-centred holistic care focusing on quality of life and extending support to significant family and carers.Hospice has perhaps become thought of as solely a place of care. It is, however, much more than this and in essence is synonymous with palliative care. Both have a philosophy of care not dependent on a place or buildings but on attitudes, expertise, and understanding.Palliative care is the active, total (holistic) care of patients and their families by a multiprofessional team when the patients disease is no longer responsive to curative treatment.

The goals of palliative care are: Achievement of the best possible quality of life for patients and their families;

Good control of symptoms;

To facilitate adjustment to the many losses of advanced and terminal illness;

To facilitate and guide completion of unfinished business;

A dignified death, with minimum distress, in the patients place of choice;

Prevention of problems in bereavement.

In this way, palliative care is a partnership between the patient, carers, and various professionals. It affirms life and regards dying as a normal process, neither hastening nor postponing death. It integrates the psychological, physical, social, and spiritual aspects of a patients care.Medical EthicsThe study of ethics and practice of healthcare have not merged much in the past, but nevertheless ethical standards are essential to the practice of the health professions. Each professional discipline has its own code of conduct, guidelines for practice and philosophy of care to direct practice within its professional remit. Ethics have a central role in clinical decision-making and involve the whole of a patients care at all stages of their illness ethics and clinical medicine are inseparable. There have been several international declarations of human rights within healthcare to protect patients from unethical practice that might nevertheless be portrayed to them as necessary evils in the course of scientific research and utilitarian principles that is, the greater good.

Palliative care demands that health professionals are both competent and compassionate. An ethical framework that clarifies complex issues can directly improve the quality of patient care. A high standard of care also requires: ethical sensitivity; an understanding of the legal dimension of a clinical situation; and good communication skills.

Despite the relative lack of moral philosophy and healthcare ethics in the curricula of healthcare professionals, it does not take long for anyone in clinical practice to face their first ethical dilemma about which they are called upon to make a judgement or have a view.

In any healthcare system, whether organised and managed by the government or by the independent sector (private or non-governmental/voluntary) or any mixture of these moral issues will frequently be raised and should challenge the practitioner, teacher, manager or researcher. Establishing moral codes of practice between the various organisations mentioned above is important at the outset of any professional relationship or client encounter.

For the practitioner, the appropriate use of professional power, compared with the relative vulnerability of the lay client/patient during the first meeting, establishes the relationship for all future transactions between the two parties. In the context of progressive illness there are many occasions that will challenge this relationship as the illness trajectory takes its course. There are increasing numbers of situations which pose ethical dilemmas, whether it be in the equal allocation of resources, equal accessibility to healthcare services, decisions about the right treatments or best care, or the right to life or to end life.

Some health carers may have studied moral philosophy as part of their general education or pursued it as a personal interest, while others may have no grounding at all in this subject. In either case, applying moral philosophy to the real world of work with patients in health services, driven by political and/or nancial agendas is difficult. It is equally difficult in those health services which are managed partly by the government and partly by private insurers, or indeed those which are managed by the independent sector, whether non-governmental organisations or private companies. All have vested interests, and all have their own agendas.

Justice for all is an easy phrase to use, but how does one decide whether, for example, a young woman with breast cancer, whose only apparent chance of survival (and possibly cure) is an expensive course of drugs, or a young child with cystic brosis, whose only chance of survival is a heartlung transplant, should be allocated the resources from a nite pot when there is money for only one of these two? How can provision be made to satisfy a palliative care patients autonomy to remain in their own home, when the only way to achieve this is to enlist the support of a reluctant and unco-operative relative to act as the main carer, and again to nd the nancial resources for professional backup and support?Ethical Education and Research

Apart from the knowledge base of moral philosophy, the most important function of studying ethics is to encourage logical, reasoned thinking rather than an unreasoned knee-jerk reaction to a given situation in everyday work. In medical practice the code of medical conduct the Hippocratic oath which used to be sworn by newly qualied doctors was reinforced by the more recent international codes and declarations formulated as a result of disregard for human rights through human experimentation and sometimes violation. These codes include the Nuremberg Code and the Geneva Convention in the 1940s, and the Declaration of Helsinki in the 1960s, amended in the 1970s, which was followed by discussion on national codes of ethical medical practice in the USA and Europe, and the development of the Institute of Human Values in Medicine in the USA. Details of all of these can be found in the text and appendices of several publications, one of which is by Campbell et al. The decit in the teaching of ethics to doctors resulted in the British Medical Association in 1986 calling for all UK medical schools to provide substantial medical ethics and human values teaching, and in the recommendations of the General Medical Council (GMC) that the doctors of tomorrow need to receive such education. Medical ethics is now part of the regular medical curriculum in several countries, including the USA and the UK.

Apart from doctors, other healthcare professionals also have their own codes of conduct or guidelines for practice, which include acknowledging the human rights of relatively vulnerable patients and being aware of their own professional responsibilities and duty to care. They, too, now have some regular input on ethics as it applies to healthcare in their rst-level training and in continuous professional development at all academic levels.

However, codes of conduct and guidelines for practice are only part of the story. They provide some parameters within which to work, but they do not necessarily guide ones thinking through an ethical dilemma (such as those already quoted above) to encourage formulation of a viewpoint or judgement.Much of the debate on ethical issues in healthcare has been related to the inclusion of human subjects in clinical trials, primarily for cancer and aspects of psychiatry research. The majority of ethics committees were originally established to scrutinise research protocols for these trials. International protocols have to be seen and agreed by the national and local ethics committees before each of the countries involved can sign up to the trial, and before the nal scan for ethical practice by the relevant pharmaceutical company. In the UK, some of the regional and, to an even greater extent, local ethics committees have extended their roles to consider other kinds of research proposals to ensure appropriate ethical practice, but these are currently still in the minority, and are by no means available in all regions.Consideration needs to be given to the ethical issues involved in all of the elements of research, not just those for human experimentation. These include choosing the appropriate methods for conducting the research, the choice of an appropriate sample, the issue of inclusion of patients and/or their relatives, condentiality for the research subjects, adequate funding and resourcing to complete the work, and so on. All of these are important considerations for the researcher.What does all of this have to do with the practice of palliative care? Clinical trials have only just begun in this specialty, and other research has been slow to develop. Palliative care is still an emerging specialty, and is only now adding to the earlier successes of systematic investigation into pain management and the early studies on bereavement. Now a wide range of issues are the subjects of research through the use of either quantitative or qualitative methods, or a combination of these.

The reasons given for not establishing an evidence base for palliative care earlier were sometimes muddled and sometimes realistic. It was considered that any research involving the seriously ill or dying was intensely intrusive. There was some justication for this view, but some people who were facing imminent death would have been pleased to share even that intensely private and lonely experience with those who were keen to learn from it. Systematic investigation of peoples feelings, symptoms, anxiety levels and life quality are all now included in research topics. Intrusion into a patients life is still recognised as a potential problem, but great care can be taken in the design of research to counter or minimise this and to gain appropriate compliance from some patients.

Attrition rates can pose a greater problem in palliative care compared with other specialties and have to be considered carefully as part of the research design. One way of minimising the effects of this is to extend the sample size by collaboration between several centres rather than undertaking more parochial and local research projects. Other standard statistical considerations also need to be taken into account for example, appropriate sample sizes for the number of variables. With palliative care services being offered much earlier in the illness trajectory, some of these issues are less problematic than they once were. Patients may live longer than the terminal care patient of just a few decades ago, and their illness may be less traumatic because of improvements in symptom management and control.

Patients have not been the only subjects of research. Carers have also played a very signicant part in adding to the palliative care knowledge base, particularly in the areas of loss and bereavement and of caring.

Ethics in Practice

There are many instances in the everyday practice of palliative care, rather than the research into it, when decisions have to be made that include ethical, clinical and practical issues. Any or all of four ethical principles considered appropriate to healthcare may need to be considered and debated. These four principles are benecence, non-malecence, autonomy and justice. An ethical viewpoint is not just a matter of opinion, but requires reasoned and rational thinking in order to propose several possible solutions to a dilemma, and then to nd the most appropriate one in the circumstances, using these four principles as a basis for the reasoning.Ethical principles are not laws, but guiding principles about what is good and what is bad, that should direct doctors and other health care professionals in their work and decision making. Issues arising over end-of-life care involving decisions that affect the nature and timing of an individual's death raise difficult ethical conflicts for all concerned and can be a source of discord between health professionals within a team, health professionals and family members, or between different family members.JusticeFor example, in the case of justice, is it just to respect and provide what are seen as a persons rights in this context, good palliative care services in the knowledge that, at least in a democracy, a person has the right to medical treatment and healthcare? If so, what if there are only sufficient resources for one person when two individuals require them simultaneously?

Should justice be interpreted as what someone feels that they deserve or need rather than necessarily their right? In the former case one could easily be trapped into the meritocracy argument. For example, consider a person who has never smoked a cigarette and yet has developed lung cancer. Should he have the best treatment for his cancer, rather than the person who has smoked cigarettes all his life? Another example may be the question of whether to give treatment or allocate resources to someone who is still able to contribute economically to society, compared with a physically or mentally disabled person or someone of older age who has less chance of demonstrating such a contribution.

In considering needs, should those who have the most perceived needs the poor, the sick and the socially disadvantaged receive rst, before those who are privileged, despite having similar medical requirements?Autonomy

Autonomy is the capacity to think, decide and act on the basis of such thought and decision, freely and independently.

In expressing autonomy an individual shapes and gives meaning to his/her life. In a situation where death is, or is thought to be, imminent, then respect for the patients autonomy assumes a particular importance. Patients with advanced disease can appear physically frail and are therefore vulnerable to well-intentioned, but unwanted, medical intervention.There is much rhetoric given to the notion of autonomy in todays consumer society. Justice rights and responsibilities is often portrayed as I have rights and you have the responsibility to provide for them, rather than the two in balance. Patients rights have been the subject of much recent discussion, perhaps in an attempt to redress the many years of paternalism which was little short of coercion at times. That said, there are some positive aspects of paternalism which still sometimes have a place in healthcare.

Although in the palliative care setting patients have some moral rights (to fair and equal treatment and care, to privacy and condentiality, to autonomy and to information and truth), they also have some responsibilities.

If a contractual alliance to plan care together is established between patient and professional, then there are responsibilities to full on both sides of the alliance. One could frequently argue that satisfying one patients rights may infringe the rights of another patient, relative or health professional. A clear example of this is the current cry of a patients right to die when they may wish the professional to help them to end their life, and they therefore run the risk of implicating them in their death. This can be seen as an infringement of the professionals right to practise his or her profession properly and legally.Paternalism is a denial of autonomy, and a substitution of an individuals judgements or action for his own good. A conflict may exist between a doctors duty of beneficence to do what is best for his patient and his respect for the patients autonomy. A claim that a duty of non-maleficence is of a higher priority fails when one considers a doctors qualification to weigh the various harms and benefits in the proposed paternalistic act. Doctors may be medical experts but they are not experts in the social, spiritual, or emotional aspects of the patients life. These non-medical aspects may be of much greater significance to the patient than his or her illness. An essential part of the principle of autonomy is the respect for the individual, who has different priorities from those of the health care professional.

Paternalism seeks to treat patients as children; such treatment is inappropriate for adults and can lead to encouraging the patient to become over-dependent. Patient autonomy can best be respected by providing full honest information and ensuring that the patient has given his consent before any medical intervention. Patient consent thus acts as a mechanism to protect autonomy against paternalistic intervention.

All medical interventions, whether diagnostic, therapeutic, or for research, carry the potential for violating patient autonomy. The central function of informed consent is to ensure a sharing of power and knowledge between doctor and patient.

Informed consent is thus much more than a granting of permission, and may be defined as:

A voluntary uncoerced decision, made by a sufficiently competent or autonomous person, on the basis of adequate information and deliberation, to accept rather than reject some proposed course of action that will affect him or her.

Doctors should offer alternative and discuss choices. This sharing option is clinically and emotionally more demanding for doctors and involves a sensitivity to the ever-changing needs of the patient.For professionals to deny emotions and feelings of vulnerability in themselves and in their patients is to deny compassion, and to distance themselves from patients. Compassion is an essential part of the doctor-patient relationship and the health team-patient relationship. A team approach allows health care professionals to share problems and to co-ordinate different skills for the benefit of the patient. There may be problems in reaching a moral consensus. The process of attempting to resolve ethical dilemmas may cause stress to doctors and nurses. There is a necessity for those working in palliative care to have time to meet together for mutual support and to reflect on their practice.

Beneficence

As was mentioned earlier, systematic research on all aspects of palliative care is a relatively recent activity. The evidence for doing good has in the past relied on anecdotes or letters of thanks to those providing palliative care services. Although these are not to be discounted, the introduction of standards against which to measure doing good is to be welcomed. Gratitude for being in a comfortable or comforting environment is one achievement of palliative care provision, but that alone may not provide the best quality of life possible for an individual with palliative care needs. They need to know what may be possible if they are to ask for it.MaleficenceWhat is the denition and meaning of harm? If the whole ethos of palliative care is to make the very best of the life that is left, then the relative risks and benets of all proposed treatment and care need to be considered by the patient (with or without their relatives, as they wish) and the professional carers. There is frequently considerable disagreement about what constitutes harm for an individual. The disagreement may be between two health professionals. For example, pain may be perceived by doctor or nurse A to be the cause of most harm to patient X. Morphine should be given to relieve it, despite its sometimes unwanted effects on the central nervous system of initial drowsiness and impaired concentration (which could also be caused by the pain itself). A second doctor or nurse, B, may consider that although pain is present and in their view is causing harm, there are less effective analgesics than morphine, but ones that would limit the unwanted effects on the central nervous system. Pain would be reduced but not eliminated, and concentration and alertness would be retained. The partially relieved pain may itself arguably impair concentration to some extent, but not so much as the effects of morphine would do. What are the relative benets and risks with regard to quality of life for such a patient?

Then consider the patients perspective. He does not perceive his pain as the worst harm. He is a practising academic and wants to continue working despite his serious illness. Work is his main reason for being. He wants to drink alcohol to relieve his pain (which he is well used to doing). For him it partly relieves his pain, it makes him relaxed (which also helps to reduce the pain) and, because of his tolerance to it, he retains a sharp, incisive mind to continue his work.

This example causes a problem for professionals. Although alcohol may be taken in moderation, the amounts that this patient is used to would be considered by them to be harmful. They know what will do good in reducing the patients pain, but they are torn between their convictions and the need to respect the patients autonomy.

The ethical problem requests to hasten death

Perhaps the most common dilemma facing nurses who care for those who are dying relates to requests to hasten death. Debates about euthanasia in the media commonly portray euthanasia and palliative care as representing opposing views about the end of life. In fact, the clinical goal of a good death is common to both. Although it is important that nurses be familiar with the public debate about euthanasia, nurses also require advice on how to deal with the requests that they receive from people for assistance to die. Nurses also need to ensure that their own viewpoint is represented.

Nurses are commonly involved in conversations about care and treatment options with patients and their families, and are often required to care for people whose views differ from their own. Nurses must be able to respond in ways that are respectful of patients and families, while remaining true to their own moral and legal position.

Case study

Mary, aged 80, had recently been diagnosed with lung cancer and brain metastases. Her assessment on admission to the community palliative-care program was undertaken by Karen, a nurse who worked as a member of the team.

Mary began the conversation by stating her wish to end her life as soon as possible and she asked Karen if the palliative-care service could arrange this. Mary was apparently surprised that euthanasia was illegal, and could not be performed by the palliative-care team.

Karen spent considerable time with Mary discussing her outlook on life and the options she faced. Mary did not appear depressed and was resolute in wanting to know more about euthanasia as an option. Because Mary was almost blind, Karen complied with her request for assistance in finding the telephone number of the Voluntary Euthanasia Society to support her desire to gain more information. Karen then left, having negotiated a formal agreement for the involvement of the community palliative-care service to provide comfort for Mary. They also agreed to meet again in the following week. Marys parting words were If I am still here.

In discussion with her colleagues, Karen reflected on the issues raised by her interaction with Mary, and on her response to them. She rang Marys local doctor to talk about her situation. According to the doctor, Mary had been a positive person. However, since separating from her husband, she had struggled with depression as well as other health problems.

On her next visit Karen learnt that Mary had indeed contacted the Voluntary Euthanasia Society. The society had been of little practical assistance, given that euthanasia was illegal. They offered no other advice or support, leading Mary to the conclusion that the society had little interest in, or understanding of, the care needs that she was experiencing. Mary had spoken to her local doctor and he had reassured her that she would experience slow deterioration, become increasingly sleepy, and eventually go into a coma and die. Karen was able to reinforce this information.

After further discussion, Mary told Karen there were worse ways to die and that at least this did not suggest that she was in danger of losing control of her mind. Mary decided not to pursue euthanasia and accepted the support of the palliative-care service.

Discussion

The case of Mary provides a clinical example of a palliative-care nurse caring for a person seeking assistance to hasten her death. Karen, despite her own beliefs against euthanasia, was able to support Marys desire for information. By establishing a relationship with Mary, Karen became privy to Marys desires and, without compromising her own position, was able to offer assistance, even to the point of finding the telephone number of the Voluntary Euthanasia Society.The trusting relationship that developed provided a context in which Karen was able to provide ongoing support and symptom management without the difference in their views creating a barrier to care. The involvement of the palliative-care team did not exclude the ongoing involvement of Marys trusted family doctor and, together, they were able to help Mary feel less desperate about her situation and able to continue living her life.

With support from her colleagues, Karen respected Marys stance and sought an understanding of her story. Karens goal was to alleviate Marys symptoms and to understand her suffering, and this required a balancing of different ethical views. Because Karen recognised that their differences in belief did not present a barrier to the provision of ongoing support, successful negotiation of palliative care was achieved.What do patients and their carers need?

The uniqueness of each individuals situation must be acknowledged and the manner of care adapted accordingly. The essence of what patients and their carers need is outlined below.

It should be clear that communication skills play a fundamental role in achieving good palliative care and quality of life for the patient.

Almost invariably, the act of communication is an important part of the therapy; occasionally it is the only constituent. It usually requires greater thought and planning than a drug prescription, and unfortunately it is commonly administered in subtherapeutic doses.

The patients need for autonomy and choice includes the right to deny the illness, to confidentiality, and, wherever possible, to choose the setting of death and the degree of carer involvement.Information

The patient has a need for sensitive, clear explanations of:

The diagnosis and its implications

The likely effects of treatments on activities of daily living and well-being

The type and extent of family/carer support that may be required and how it may be addressed.

Expected symptoms and what may be done about them.

Quality of Life

The patient has a need to lead a life that is as normal, congenial, and dignified as possible. An individuals quality of life will depend on minimising the gap between their expectations and aspirations and their actual experiences. This may be achieved by:

General respect, as a person as well as a patient, from properly motivated, trained and experienced staff, who see themselves as partners in living.

Effective relief from pain and other distressing symptoms.

An appropriate and satisfying diet.

Comfort and consolation, especially from those who share the patients religious beliefs and/or belong to the same ethnic, cultural community.

Companionship from family and friends, and from members of the care team.

Continuity of care within the primary health care team and from different parts of a specialist service.

Consistent and effective response to changes in physical and psychosocial discomfort.

Information about support, self-help and other groups and services.

Support for Carers

The patients family or other carers have a need for support at times of crises in the illness and in their bereavement. These needs include:

Practical support with financial, legal, or welfare problems

Information about the illness (with the patients consent) and the available support

Planned respite from the stress of caring in the home situation.

Suitable involvement of carers in the moment of death and in other aspects of care.

Bereavement support

Special support where the patients death may directly affect young children, or where the patient is a child or adolescent.

Community palliative care professional roles

The variety of potential professional contact with a terminally ill patient is illustrated in the table previous. In practice, only a few individuals will be regularly involved in any one case: commonly the district nurse. Yet there are additional specialist skills that can be called upon as required.

Although teamwork is valued by the primary health care team (PHCT), the structure, distribution of responsibilities, traditions, and workload combine to make it function in a more hierarchical way.Medical Roles

The GP is a medical generalist responsible for care of approximately 2000 patients in the community. They have a range or roles including diagnosing and managing diseases, and also provide first-contact 24-hour care. Hence, the GP is perceived as the team leader, holding responsibility of patients and staff employed by the practice, and also families of terminally ill patients.

A consultant in palliative medicine has gained appropriate postgraduate qualifications through specialist training, and is usually accessed by any member of the palliative care team. Their roles are to support the specialist palliative care nurse, and the PHCT in their care of patients.Hospital consultants from any speciality (eg. anaesthetist, geriatrician) can also be accessed to perform a home visit and supply an opinion to the rest of the team.

Nursing Roles

District nurses play an important part in domiciliary palliative care (malignant and non-malignant disease), having considerable contact with many patients. They have several key roles in the care team including: assessment of need, general nursing care and providing emotional support/education to patients/families.Specialist palliative care nurses have added to their basic and post-registration, a period of specific palliative care training. Some will be termed Macmillan nurses in recognition of the charity that supported their specialist training. They are usually based in a hospice/hospital, but practise within the community. They are equipped to assess the palliative care needs of patients referred by the PHCT or hospital, and can provide specialist knowledge.

Marie Curie nurses are organised and funded by the nationwide charity, Marie Curie Cancer Care, in partnership with the NHS. They provide nursing care and support to patients and carers in their own homes.

Practice nurses are employed by the practice and their numbers are rapidly increasing. Although there is not standardised training, they often have considerable experience. They are based in the practice premises and have working roles eg. health promotion/education/prevention, that will not immediately bring them into contact with terminally ill patients. However, they will share with the GP an intimate knowledge of the practice population and can occasionally be involved in palliative care.Other Health Care Professionals

Hospital pharmacy departments and community pharmacies are a source of a great deal of information and support for patients, carers, and prescribers. In addition hospital and community pharmacists are now encouraged by the Royal Pharmaceutical Society of Great Britain to liaise with each other in order to provide seamless care to patients transferred to another hospital/hospice.Basic training for physiotherapists is now at degree level they are increasingly being employed in the community. GPs are often required to sanction the service, but all nursing teams will have access to a community physiotherapist. Their main roles are symptom control and improving patient mobility, including walking aids. They also give advice to carers and patients on lifting and transferring. In palliative care, holistic therapy includes the setting of achievable treatment goals that foster hope, quality of life, control and independence.

Occupational therapy has a role in maximising patients potential for safe independent living. Traditionally, this therapy has concentrated on the transition between hospital and home, but changes in the health service have resulted in greater community work focus. Referrals can be made by any individual, although the GP is often asked to provide additional information and authorise the service.Social workers are employed by local authorities and work closely with the Primary Health Care Team. They will accept referrals from any source, but can be contacted through the GPs surgery or local services office. They fulfil several roles in palliative care. Among these are giving advice on government financial benefits. They also assess the patients social and continuing health care needs, and can, for example: provide access to particular forms of social care eg. meals on wheels, home help etc. They also liaise with occupational therapists about housing adaptations; or advise on child care issues.

Recent changes in the delivery of services by general practitioners have resulted in an expansion of practice-based counselling. Practices vary in whether they provide this service, and in the experience/training of the counsellor employed. However, practice counsellors can give emotional support to patients and their family.

Clinical psychologists use techniques helpful in complex psychological maladjustment to a terminal illness (eg. cognitive, behavioural, marital therapies). Patients with past psychiatric history are particularly at risk of adverse responses.

The dieticians specialist knowledge and experience can make useful contributions to the team. Their basic training is at degree level and they can be hospital or community based. They give advice to patients and staff on diet and nutritional supplements, and work closely with the speech therapists in patients with swallowing difficulties.

Other Carers

Home care workers have a role in such things as housework, shopping, and collecting prescriptions. They are employed on the strength of their experience and attitude, and have recently taken on some basic nursing duties with patients, such as getting them in and out of bed, dressing, washing and toileting.

Social services can arrange the home delivery of midday meals for housebound patients meals on wheels. Alternatively, bulk delivery of precooked frozen meals can be organised. There is a fixed charge for this service but at a low cost.

Vulnerable patients (especially elderly patients) can be housed in a variety of accommodation staffed to provide additional cover and security. These include state services (eg. old peoples homes), voluntary organisations, and private schemes. The accommodation is usually adapted according to need and is staffed to provide various degrees of support.

Private agencies can provide registered or auxiliary nurse input at home. They can be employed privately by individuals or to cover shortfalls in legal services. Agencies need to hold a Certificate of Licence issued by the local authority. This confirms basic standards in staff recruitment and personnel management. These agencies can also organise staff to provide social care (eg. domestic duties, companionship).

Volunteers can come from all walks of life and provide a wide array of services. They are organised through the hospice. Their specific roles in the community are varied (eg. befriending sitting, acting as a driver).

Spiritual advisors can come in many forms, but typically are recognised as religious figures, who can facilitate a patients spiritual health. Their influence on patient well-being can be great, particularly if one considers suffering in a holistic sense. This role can be filled by health care workers, a religious leader assigned to a health institution, or the more traditional religious figure from the community.

Many patients receive benefits from complementary therapists, and consequently this help is often encouraged by traditional health professionals. However, one should be mindful of unregulated services, involving people who may be practising unethically. With close verification, however, professional behaviour can be assured and patients helped by complementary therapy.

Bereavement visitors are volunteers organised and supervised through hospices to provide support following a bereavement. Standards of recruitment and training are the responsibility of the hospice. Principles of good symptom managementTwycross hospice amongst others has much in the field of research to ensure an evidence-based scientific rigour in palliative care. The management of any problem/dilemma should be approached by: Anticipation;

Evaluation and assessment;

Explanation and information;

Individualised treatment;

Re-evaluation and supervision;

Attention to detail.

Anticipation

Many physical and non-physical problems can often be anticipated and in some instances prevented. Failure to anticipate problems is a common source of dissatisfaction for patients. Understanding the natural history of the disease with specific reference to an individual patient, awareness of the patients psychosocial circumstances, and identification or risk factors allows planning of care by the team. For example, in a 45-year-old woman, recently found to have spinal metastases from her breast cancer, several potential issues may be anticipated.

Pain-may need NSAID (anti-inflammatory drugs), opioids, and radiotherapy.

Spinal cord compression-examine neurology if unsteady or numb.

Young children-may need help, practically and in informing them of news.

Work-may need financial and benefit advice.

Hypercalcaemia-check blood if nauseated or confused.

Evaluation and Assessment

An understanding of the pathophysiology and likely cause(s) of any particular problem is vital in selecting and directing appropriate investigations and treatment. This is illustrated by the following specific examples.

Sedation for an agitated patient with urinary retention is not as helpful as catheterisation. Antiemetics (anti-nausea drugs) for the nausea of Hypercalcaemia are important but so too is lowering the serum calcium (if appropriate).

A patient who is fearful of dying may be helped by discussing and addressing specific fears rather than taking sedatives.

Pain in a vertebral metastasis (transmission of disease to adjacent part of body) may be helped by painkillers, radiotherapy, orthopaedic surgery, TENS (electrical nerve stimulation), and acupuncture. A decision as to which to prescribe is made only by careful assessment.

Co-morbidity is common and should always be considered. For example, it is easy (and unfortunately common) to assume that pain in a patient with cancer is caused by the cancer. In one study, almost a quarter of pains in patients were unrelated to the cancer or the cancer treatment.

Explanation and InformationManagement of a problem should always begin with explanation of the findings and diagnostic conclusions. This usually reduces the patients anxieties even if it confirms their worst suspicions for example, a monster in the light is usually better faced than a monster unseen in the shadows. Further information may be useful to some patients. A clear explanation of the suggested treatments and follow-up plan is important for the patient to gain a sense of control and security.

Individualised treatmentThe physical, social, and psychological circumstances of the patient and their views and wishes should be considered in planning care. For example, lymphoedema compression bandages may be unused unless there is someone available to help the patient fit them daily.Re-evaluation and Supervision

The symptoms of frail patients with advanced disease can change frequently. New problems can occur and established ones worsen requiring proactive follow-up. Interventions may be complex (many patients take >20 tablets a day) and close supervision is vital to ensure optimum efficacy and tailoring to the patient.Attention to Detail

The quality of palliative care is in the detail of care. For example, it is vital to ensure that the patient not only has a prescription for the correct drug but also that they can obtain it from the pharmacy, have adequate supplies to cover a weekend, and understand how to adjust it if the problem worsens.Limits of symptom controlThere is always something more that can be done to help a patient but it is not always possible to completely relieve symptoms. Specialist advice should usually have been sought for help in the management of intractable symptoms. This extra support is in itself an important way of helping the patient.

In such situations an acceptable solution must be found to provide adequate relief of distress for the patient. For management of a physical symptom and sometimes of psychological distress this may be a compromise between the presence of the symptom and sedation from medications. It is hard for a team to accept suboptimum relief of symptoms, and discussions with the patient and the family may be very difficult. It is important for the team to remember the great value of their continuing involvement to the patient and their carers; to acknowledge how difficult the situation is and not to abandon the patient because it is painful and distressing for the professionals.

Slowly, I learn about the importance of powerlessness.

I experience it in my own life and I live with it in my work.

The secret is not to be afraid of it not to run away.

The dying know we are not God.

All they ask is that we do not desert them.

Health workers may be reluctant to administer medication to a dying patient for fear of killing them, but it is important that good symptom control is maintained. The most common symptoms in the dying phase are pain, agitation and respiratory tract secretions. It is important that drugs such as morphine which can no longer be taken orally are continued by an alternative route, and that as-required medication is prescribed for these common symptoms. Anticipator prescribing enables nurses to respond to patient distress without delay.Bereavement can be complicated if relatives have seen the patient dying in distress, but this can generally be avoided without appropriate prescribing and care.

Conclusion

So why is it important to study ethics, particularly in relation to palliative care? Clearly there are ethical issues and dilemmas to be considered every day in palliative care, just as there are clinical ones. The two really are inseparable. The decision to retain a seriously ill patient in an inpatient unit for care because there are inadequate support services in their own home to deal with the extent of difficult symptoms (despite their own wish to be at home) poses clinical as well as ethical issues. Each individual human story is complex and frequently difficult to resolve at all levels. Each situation needs to be considered in a logical, objective way as well as an emotional, human one. Then a balanced view needs to be taken, preferably jointly with more than one professional who knows the circumstances, and in dialogue with family members if that is desired by the patient. End-of-life decision-making and the related questions of the active ending of life are complex and important. These difficult problems require nurses and other team members to pause and consider their response.

The study of ethics is important to enable such reasoning to take place in the context of an understanding of the moral issues that are part of all of our practice. Several innovative ways of teaching ethics have been proposed and tried in palliative care. It is well worth looking at these models from the literature. It is also valuable to search for models of teaching ethics in other specialties, with a view to replicating them in the care of the seriously ill. Much has already been successfully achieved. There is no doubt that simulating hypothetical examples of frequently occurring ethical dilemmas for use in teaching (particularly multi-professional teaching) is extremely valuable. Extending these ideas into rehearsing real situations that are likely to occur for individual patients is also helpful. Anticipating potential dilemmas and discussing them with other professional colleagues is helpful in planning for the real event, when time may well be against one. The study of ethics is every bit as important as the study of each individuals main professional discipline be it medicine, nursing, religion, social work, or whatever. In this crucial time in a patients life, when life itself is limited and under threat, every opportunity should be taken to reason with them the best path to tread for all concerned. There will never be one right answer to an ethical dilemma, just a series of possible solutions from which to select the most appropriate for all concerned.Clinical practicality offers a useful ethical framework for clinical care because it allows for a full consideration of the individual and his or her unique context when assessing the need for intervention and the type of intervention that is appropriate. The journey towards death takes place in a socio-cultural context that includes the care needs of the individual and his or her family. If the palliative care goals of comfort, dignity, and quality of life are to be met, healthcare professionals need a workable ethical framework in which the team can work towards its goals.

Improved communication between doctors, nurses, patients, and patients families will lead to a better mutual understanding of the patients wishes. Ethical dilemmas have no easy solution, but using a framework of ethical principles and treating patients with respect and compassion may help pose the right questions. It is in the struggle with such questions that we define what lies at the heart of being a doctor or nurse.

Palliative care may be given in a hospital or community settings, not only in hospices. Patients need doctors and nurses to listen to their views. A requirement for informed and understood consent serves to facilitate a partnership between patients and professionals. In the context of such a partnership both parties become more aware of each others needs and can then work effectively together to achieve the best possible outcome for the one who is dying and the many who care.BibliographyBooks

Handbook of Palliative Care edited by Christina Faull, Yvonne Carter, Richard Woof

Ethical Issues in Palliative Care by Patricia Webb

Palliative Care Nursing edited by Margaret OConnor, Sanchia Aranda

Medical Ethics: A Very Short Introduction Tony Hope

Research Articles

The Ethics of Palliative Care: European Perspectives - J Med Ethics 2005;31:e9 doi:10.1136/jme.2003.004069 D Jeffrey Ethical dilemmas in palliative care in traditional developing societies, with special reference to the Indian setting - J Med Ethics 2008;34:611-615 doi:10.1136/jme.2006.018887 - S K Chaturvedi Ethical issues arising from the requirement to sign a consent form in palliative care - J Med Ethics 2008;34:279-280 doi:10.1136/jme.2006.019075 - I Plu, I Purssell-Franois, G Moutel, F Ellien, C Herv Ethical Issues in Palliative Care J E Ellershaw, Eve Garrard - http://www.asia.cmpmedica.com/cmpmedica_my/disppdf.cfm?fname=K7.pdf Ethical issues in palliative care - Issues Med Ethics.2003 Oct-Dec;11(4) - Zulica BarrettoRadio Broadcasts

Terminally Ill and Suicidal Inside the Ethics Committee 6 August 2009, BBC Radio 4 Kfir N, Slevin M. Challenging Cancer: From Chaos to Control. London: Tavistock/Routledge, 1991.

Cancer Pain Relief and Palliative Care. Technical Report Series: 804. Geneva: World Health Organisation, 1990.

Hope T, Fulford KWM, Yates A. The Oxford Practice Skills Course. Oxford: Oxford University Press, 1996: 28-29.

Beauchamp T and Childress J (1983) Biomedical Ethics. Oxford University Press, Oxford.

Doyle D, Cherny NI and Calman KC (2004) Oxford Textbook of Palliative Medicine. Section 3. Oxford University Press, Oxford.

Campbell A, Charlsworth M, Gillett G and Jones G (1997) Medical Ethics. Oxford University Press, Auckland.

General Medical Council (1996) Tomorrows Doctors. General Medical Council, London.

Seale C and Cartwright A (1994) The Year Before Death. Avebury Press, Aldershot.

Gillon R. Philosophical Medical Ethics. Chichester: John Wiley, 1985.

Higgs R. Shaping our ends: the ethics of respect in a well-led NHS. Br J Gen Pract 1997; 47: 245-249

Gillon R. Philosophical Medical Ethics. Chichester: John Wiley, 1985.

Alderson P. Abstract bio-ethics ignores human emotions. Bull Med Eth 1991; May: 13-21.

Addington-Hall J and Higginson I (2001) Palliative Care for Non-Cancer Patients. Oxford University Press, Oxford.

Buckman R. Communication in palliative care: a practical guide. In: doyle D, Hanks GWC, Macdonald N, eds. Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 1993: 47-61.

Twycross R. Symptom Management in Advanced Cancer, 2nd edn. Oxford: Radcliffe Medical Press, 1997.

Blyth A. An audit of terminal care in general practice. BMJ 1987; 294: 871-874

Twycross RG, Fairfield S. Pain in far advanced cancer. Pain 1982; 14: 303-310

Cassidy S. Sharing the Darkness. London: Darton, Longman and Todd, 1988.

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