It is important to recognise that this definition is not disease orientated but patient focused, and also reflects changes made to move away from a disease-specific definition, such as cancer, to an understanding that palliative care should be available to all with a life threatening illness. It also encompasses early introduction of a palliative approach, while enabling a person to continue with life-prolonging therapies, such as dialysis.

Palliative care aims for an holistic approach to care of patients and families, in situations where the disease is advanced, progressive and incurable. It encompasses physical, psychological, practical, and spiritual aspects of care, and includes consideration of the needs of families and informal carers. For those with ESKD, it is not yet clear what model of palliative care provision should be adopted; whether palliative care should be provided predominantly by renal professionals, by specialist palliative care professionals, or by primary care professionals, or (most likely) by some combination of these three groups. Much will depend on the configuration and availability of local services. Palliative care has been, and still is, at different stages of development throughout the world, as Meghani indicates (Meghani 2004). She describes palliative care as a dynamic concept that all practitioners should be integrating into their daily practice. It may be inappropriate to move a person to a different group of health care professionals just because of their stage of life. One of the big influences on and challenges to practice therefore is the integration of the extensive knowledge and experience in palliative care from the specialist palliative care field into nephrology practice, for the benefit of patients and families.

Recent Government and Other Initiatives

Recent political and national developments in the United Kingdom have given considerable impetus to development of clinical services for those approaching the end of life. The National Service Framework for Renal Services gives the following as a quality requirement:

People with established renal failure receive timely evaluation of their prognosis, information about the choices available to them, and for those near the end of life a jointly agreed palliative care plan, built around individual needs and preferences ((Department of Health 2005).

This emphasis on palliative care in the National Service Framework help provide the impetus to incorporate a more patient-centred approach in advanced kidney disease. In the United Kingdom, nephrology was one of the first specialities to adapt the national End-of-life care Strategy (Department of Health 2011) and make specific recommendations for the ESKD population. A Framework for implementing End-of-life care in Advanced Kidney Disease was produced (NHS Kidney Care 2009). This has had an important impact within renal units, to ensure that improvements in palliative and end-of-life care for those with advanced kidney disease are achieved. Test projects were subsequently undertaken to uncover the best ways to implement the recommendations of the framework, and this led to the publication of a detailed ‘roadmap’ to help renal units implement best palliative and end-of-life care (NHS Kidney Care 2012).

It is important to distinguish between palliative and end-of-life care. Meghani (2004) cautions against using the terms synonymously; end-of-life care is palliative care, but not all palliative care will be end-of-life care. Palliative care interventions, which focus on a holistic approach, may be both appropriate and very helpful, up to two or three years or more before end of life, and can often markedly improve quality of life in a sustained way. If symptom burden is high and quality of life is poor, despite disease-based interventions, then this is the time to consider palliative care, whatever the expected prognosis.

Communication, Decision Making and Planning

Patient communication

As disease progressed and the end of life approaches, skilled communication becomes increasingly important in the delivery of effective patient care. Communication between patient and nurse is important; patients want to know what to expect as their illness advances, and they value professionals who can talk openly about death and dying (Davison and Simpson 2006). Contrary to the beliefs of many professionals, openness does not remove hope but helps to focus it in a more realistic way.

Information needs to be delivered in amounts, and at a pace, that each individual patient can cope with. It is important to ensure there is the time and conditions for difficult questions to be asked and answered, since many factors will prevent such questions being explored. Communication between the patient and their family also becomes increasingly important to patients as death approaches, and nurses have a key role in facilitating this. Sometimes, understandably, family members adopt a protective attitude towards each other, shielding each other from bad news, but this is not always helpful, particularly if the patient is seeking openness and honesty.

Information also needs to be carefully matched to each patient’s preference for information and for involvement in decisions. In general, doctors and nurses tend not to raise their concerns about a patient’s declining health and worsening prognosis unless a patient asks about this, and patients often wait for professionals to raise such matters. This can lead to a collusion of silence, where both continue to focus on other (often disease-related) issues, and do not address underlying concerns about declining health.

At the same time, the patient’s choices about end-of-life care need to be explored. If open communication does not occur, choices are likely to be more limited. An example of this is the preference to die at home if possible; this cannot be facilitated if initial communication and discussions about the implications of the illness have not taken place. Box 11.2 provides some suggestions of useful ‘opening questions’ that nurses can use to help enable a patient or their family to raise their concerns readily.

For patients with ESKD, some specific considerations are important. Firstly, some patients will be living with their renal condition over a long period of time. It can be more difficult, then, for both patient and professional to perceive the change from living with a long-term condition to a decline in health towards death. If health professionals do not see this change, they may well deny the patient and their family the opportunities they need to understand their illness and address and plan for their remaining time. Secondly, the pattern of decline may be more uncertain than for other terminal conditions such as cancer. The limited available evidence suggests that prognosis in conservatively managed patients varies considerably, depending partly on the underlying cause of the renal failure and on which other comorbid conditions coexist (Smith et al. 2003) (Chandna et al. 2011). Dealing with this uncertainty is hard for both patient and professional and it needs to be honestly acknowledged in any communication. Thirdly, renal professionals rightly focus on active disease management. End-of-life care requires a change of focus from a primarily disease-centred approach to a more patient-centred approach. Disease management takes a much lower priority, particularly as the end of life approaches. Controlling symptoms, attending to psychosocial and spiritual needs, and anticipating future care needs all become as important, or more important, than renal expertise. Nurses may feel uncertain about their skills in this area, particularly if they work with patients at the end of life infrequently.

Family communication

Effective end-of-life care cannot be delivered without good family communication. However, the ethical and legal responsibilities of the nurse are predominantly to the patient, so it is important to seek patient agreement before any communication with the family, particularly if that communication takes place away from the patient. In the final days of life, increasing uraemia may mean that patients are confused, and increasingly lack the ability to make decisions for themselves. It is important, therefore, to ensure from the beginning that relevant family members are involved in any management decisions (if the patient wishes) and that they are aware of the patient’s end-of-life preferences, before the patient becomes less well. Holley (2005) highlights the importance of the patient-family relationship, rather than the patient-professional relationship, as a better context for exploring preferences and undertaking advance care planning.

Communication within the team

A number of key decisions will be made with patients as they approach the end of their life. These include decisions around withholding or withdrawing dialysis, decisions around preferred place of care and death, and cardiopulmonary resuscitation (CPR) decisions, among others. Each of these needs to be communicated to the whole renal team. Patients will often see different professionals at each clinic visit or hospital admission, and it is important that patient and family are given clear and consistent messages.

A wide variety of nonrenal healthcare professionals may also be involved in end-of-life care, ranging from the general practitioner and district nurses to specialist palliative-care professionals (who may be community, hospital or hospice based). Time and energy therefore needs to be devoted to communicating any decisions made to all members of the team, including those providing care out of hours, and those who may be called in a crisis, both at home or in hospital.

Dialysis decision making

As disease advances, decisions may be made either to withdraw dialysis, or to follow a conservative pathway. This raises complex and challenging issues. These issues have been reviewed and guidelines have been developed in the United States to inform dialysis decision-making (Renal Physicians Association 2010). The guidelines are built on shared decision-making, recognising that patients are individuals and have their own history, perspectives, and preferences.

Renal patients are known to have widely differing preferences for involvement in decisions, but generally receive less information than they want and have less involvement in decisions than they prefer (Orsino et al. 2003). Some nephrologists feel that most, if not all, patients requiring renal replacement therapy should receive dialysis, but there is growing recognition that, for some patients, dialysis may not greatly increase survival while adding a considerable treatment burden. For these patients, conservative management (care without dialysis, but with management to minimise disease progression, and full supportive and palliative care) may be a better option, although any final decision will depend on patient preferences as well as professional advice. Work by Chandna et al. (2011) and others has shown that patients with poor functional status and high levels of comorbidity do not do well on dialysis. Carson et al. (2009) also describe poor survival in older patients on dialysis, but recognised that survival alone is an insufficient measure of outcome – they also recorded hospitalisations and time spent attending for dialysis.

Following a conservative management pathway sometimes demands especially difficult decision-making, since it requires weighing up patient preferences, estimated survival on or off dialysis, anticipated quality of life on or off dialysis, and the treatment burden with dialysis. Estimating survival and quality of life is difficult for the individual patient. These factors have been studied in patients on dialysis, but symptom burden, survival and quality of life have rarely been studied in patients who are managed conservatively.

Advance planning

Effective and appropriate care can only be delivered by planning ahead and anticipating future care needs. It is therefore important to explore sensitively with patients (and their family, if desired) what their wishes are for future care, or in the event of a sudden deterioration or crisis. Relatively few patients choose to write a formal advance directive, but all should be offered the chance to discuss preferences for future care and management. These discussions should be carefully documented and revisited regularly (since preferences may change).

Advance directives are written documents which specify a patient’s preferences, in anticipation of loss of the capacity to make his or her own decisions, when they are less well. In the United Kingdom, the Mental Capacity Act (which became law in 2005) clarifies the legal status of such documents, and also makes provision for a person to be named to represent the patient’s preferences in their place (known as Lasting Power of Attorney). The Mental Capacity Act is based on five principles designed to protect people who lack capacity to make particular decisions, but also to maximise their ability to make decisions, or to participate in decision-making, as far as they are able to do so. The principles are outlined in Box 11.3.

Stay updated, free articles. Join our Telegram channel

Join