What "best practice" could be in Palliative Care: an analysis of statements on practice and ethics expressed by the main Health Organizations

One of the main objectives of a culture is re-orienting death towards life[1]: each person's death threatens society's cohesion by casting a shadow on the feelings of safety and continuity on which every human being bases his/her life and finds support and consolation. For ages the "good death" reflected the community's religious beliefs, and the suffering of the dying person was considered mostly as an unavoidable aspect of the dying process. A good death, in western world, was substantially to die at peace with God and with men[2]. The technological progress of medicine is medicalizing the death more and more, and the gap between the "good" and the actual death has been widening during the last decades[3, 4]. Medicine did not deal with dying and death until the birth - some 50 years ago - of the hospice movement, which has the paramount merit of having focused the need of caring for dying persons in order to provide them the best quality of life achievable in their conditions. Actually, the aim of the hospice movement, explicitly or implicitly expressed by its leading persons, is letting terminal patients die better [5, 6]. The praxis of palliative medicine, the discipline originated from hospice movement, grounded on scientific approach and rational methods, mainly consists in comprehensive treatments of pain and physical symptoms, in caring for the patient's and their family's needs, and in helping them to face anguish and solitude [7].

Palliative interventions are quite effective on physical suffering. Nevertheless, being free from physical symptoms, even if an important aspect of palliative care practice, is not always enough: psychological, social, emotional and spiritual suffering ought to be also controlled [8]. The non-physical suffering, however, is a much more individual and private matter, and refers to the individual's biography, psychology, beliefs, expectations and cultural mind-set [9, 10]. Treating mental and spiritual anguish with the same approach of body problems does not seem that effective and correct, and for some persons, a good death is sometimes missed [11‐13].

It seems that an explicit model of best palliative care practice, accepted by all - at least in western Countries - actually does not exist, but the palliative care literature converges towards some specific aspects that contribute to define a death as a good one: symptom control, careful consideration for the social and relational context, preparation to die, and existential wellbeing [14, 15]. Thus, care must be centred on the patient's wishes and choices [16‐18]: palliative care is, in fact, based on autonomy.

A model of best practice in palliative care should be flexible and discussable, and, specially, manifold. It is hardly maintainable that a unique model can be used in a world of moral and cultural strangers [19‐21] given that what makes death "good" is different for everyone. In reality, inside hospice movement and palliative care, there are no official statements which state and describe that model. It is, however, probable that the practice of palliative care is actually grounded on a implicit model.

Recently, the category of "good death" as an outcome of palliative medicine has been broadly discussed [7, 22‐31]. Furthermore the hospice movement has a strong stand against euthanasia and assisted suicide [32‐34]. The querelle between palliativists and the right-to-die movement is actually on the limits that ought to be set on the personal autonomy, notwithstanding the common cultural roots of both parties -i.e. "the right of individuals to make their own choices about how they should live and die" [9].

In order to understand if an implicit model of best practice in palliative care does exist, we carried out a qualitative analysis of the statements on practice and ethics of palliative care expressed by the main health organizations to show which dimensions of end-of-life care are taken into consideration.

This qualitative study aims at investigating the notion of "best palliative care practice" arising from the official documents by the most representative health organizations committed to the definition of policies and guidelines for palliative and end-of-life care.

The organizations and their documents were selected on the basis of the following three criteria:

The organization is representative (e.g. on an international or on a national level) of several associations or of professional groups involved in health care.

The organization has produced documents on ethical, physical and psycho-social issues related to end-of-life care.

The documents analysed focus on the general practice of palliative care, pain relief and the care of dying patients in general, or deal with more specific end-of-life issues, such as euthanasia, assistance of patients in a permanent vegetative state, sedation at the end of life, and the use of nutrition and hydration, assisted suicide.

The selection and analysis of the documents have been carried out in two phases: a first survey was completed in 2007; this first survey was updated in 2008 in order to find out recently published documents, as well as revisions of the documents included in the first survey.

The procedure adopted for finding the documents combined two methods:

A retrieval of the directories of organizations available on the websites of the

International Association for Hospice and Palliative Care (IAHPC Directory: http://​www.​hospicecare.​com/​yp/​) and of the European Association for Palliative

Care (EAPC Directory: http://​www.​eapcnet.​org/​organisations/​OffBodies&​Ass.​html), which allowed to identify several organizations that produced documents.

A document research on the web (Google search: "position statement" AND ("dying" OR "end of life care" OR "good death" OR "palliative care")), by which it was possible to find out additional documents from a number of organizations that were not included in the directories of the IAHPC and of the EAPC.

The documents were classified as:

a) Documents of palliative care institutions, or other medical or health institutions;

b) Documents on end-of-life/terminality in general, or on a specific situation/need/symptom of end-of-life;

c) Documents classifying themselves as "position statement" (in the title), or "others".

The documents were analysed through a framework of the components of end-of-life care which was developed on the basis of a literature search in a previous work [33]. That review included both qualitative studies on the perceptions of a "good death" amongst patients, caring staff and family members, and more theoretical studies on the origins and the history of the notion of "good death". This thematic grid, which has been updated with the most recent citations [11, 14, 19, 30, 35‐64], was composed of 4 main "areas" (i.e. A, B, C and D) and of 12 "sub-areas" (i.e. A1, A2, etc.) (see table 1).

The content analysis of the documents was carried out with a view to finding out in the texts the various areas and sub-areas of the framework.

Overall, 34 organizations were identified, i.e. 7 international organizations, and 27 organizations operating on the national level in four different countries (Australia, Canada, UK and United States). Fifty-six documents were selected and analysed.

Additional file 1 provides a list of the documents, including the reference to the name and the level of representativeness (international, or national) of the organization which produced the document, and the code assigned to the document in the course of texts analysis. Moreover, the table indicates the various types of documents selected for this study: most of them (38) are position statements.

Additional file 2 shows all the relevant quotations from the documents analysed. The attachment consists of several tables sorting quotations by "areas" and "sub-areas", in order to illustrate the specific quotes referring to the elements of the framework.

The presence and the specific meaning of sub-areas in the documents are reported in the following.

Analysis of the documents shows that all the dimensions of end-of-life care found in the literature and included in the framework (see Table 1: Thematic grid) are echoed in the statements of the most representative organizations committed to the definition of policies and guidelines for palliative and end-of-life care. It is worth noting that all the national organizations found according to our research strategy belong to English speaking countries. This might be due to the fact that it was in these countries that the palliative care movement first developed and flourished in the 60s and 70s.

In general, the "sub-areas" of symptom control (i.e. A1, A2 and A3) as well as those referring to relational and social issues (i.e. B1, B2, B3 and B4) are more widely covered by the documents than the "sub-areas" related to "preparation" (i.e. C1, C2 and C3) and to "existential condition" (i.e. D1 and D2). This result is consistent with what is stated by several studies showing that the control of symptoms and of the psychosocial dimension of dying [15, 17, 25, 26, 35‐41], is given a higher relevance than the control of the dying process by the patient himself [15, 19, 25, 26, 34, 51, 55].

With regard to symptoms, the control of pain and of psychological distress (i.e. A1 and A2) is acknowledged as fundamental, while being assisted by a staff member in order to make the process of dying more comfortable (i.e. A3) is considered as less relevant. This result seems to be counteracted by the evidence from the literature, which shows that being comfortable is seen as important both by patients and by health care professionals [59].

As to the relational and social dimension, a large number of documents state that individual preferences as well as personal values and beliefs (i.e. B1) should be respected and honoured. This issue has been extensively discussed in the literature [4, 12, 23, 25, 51, 56, 60] and is particularly relevant for patients sharing cultural values which are different from those dominant in society [17].

Most documents combine the respect for personal beliefs and values with the importance of addressing one's spiritual needs and of facilitating religious practices (i.e. D2), thus showing consideration for individual preferences both from the relational and from the existential perspective. However, the importance attributed to respect for individual preferences seems to be in contradiction with the minor weight lent to the choice of the place of dying (i.e. C2).

Further discrepancies can be found between issues related to preparation and issues related to the relational and social dimension of dying. Indeed, many documents recognise the importance of good communication between the patient and the caring staff (i.e. B3), and state that communication should include information about diagnosis and prognosis, as well as the discussion of issues related to death and dying. Yet, this result jars with the fact that only a few documents refer to the awareness of diagnosis and of impending death (i.e. C1), an omission which is even more striking since how often Western surveys address this issue [4, 12, 23, 25, 51, 53, 57, 60].

It might be argued that, due to the discrepancies between the element of preparation and the relational and social area, it is not possible to derive from the documents an integrated model of best palliative care practice. In particular, it might be suggested that the documents do not offer a coherent model for policies directed to the actual empowerment of patients in the decision-making process. This is especially evident with regard to end-of-life decisions. While there is a general agreement between the documents that patients should take part in end-of-life choices, withdrawing and withholding of life-sustaining treatments are viewed as the result of an evaluation that is mainly up to the doctor. Indeed, the consistency of end-of-life choices with the patient's wishes is given only a minor relevance.

Another result that is worth discussing is the small relevance given to being in control of oneself (i.e. C3). Only one third of the documents refers to this item, whereas it is one of the most important elements of end-of-life care present in the literature [59]. This might be due to the fact that the maintenance of control is a multifaceted and a patient centred issue, which can only with difficulty be addressed by policy statements on palliative and end-of-life care. The same conclusion may be suggested for completion and meaningfulness at the end of life (i.e. D1), which is given a minor relevance in the documents, while several qualitative studies on patients, families and caregivers account for this item [12, 17, 23, 56, 60, 62].

On the other hand, there seems to be no persuasive explanation to the fact that minimising the burden of caring on the family is hardly covered in the statements. While, according to the literature, freedom from financial and physical burden is considered by patients and caregivers as one of the most important component of a end-of-life care [17, 56, 58, 59, 61] only a few documents address this issue. It might be suggested that, in general, the statements tend to consider "financial and physical" support to the family as less relevant than "emotional" support. In fact, a great number of documents consider emotional support to the family (i.e. B2) as reasonably important. Nevertheless, this consideration does not prevent from observing that minimizing the burden of care is generally underestimated in the documents.

Finally, it is worth noting that a definition of quality of life at the end of life is lacking, whereas this issue is widely covered by the documents. Of course, the concept of quality of life is highly individual and fluid, and it might be difficult to give a precise definition of this notion. However, several studies have already proved the possibility of developing instruments to assess both the quality of life for dying patients and the quality of care at the end of life [52, 57, 59, 63, 64]. Therefore, it might be observed that the documents generally fail to address the issue of quality of life in a consistent and precise manner.

This work demonstrates that all the dimensions of end-of-life care stemming from the literature are reflected in the official documents by the most representative organizations committed to the definition of guidelines for the care of the dying patients. A few additional items emerged from the analysis of the documents, thus completing the framework which was formerly taken from the literature. The resulting grid (see Table 2: New thematic grid) consists of a more comprehensive framework, which might facilitate the assessment of the high quality palliative care process.

On the other hand, an integrated model of best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model.