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History of hospice care development dates back to medieval times, but modern hospice movement started just in 1967 with the establishment of St. Christopher’s Hospice in London by Cicely Saunders. Hospice’s unique features comprise of caring for all dimensions of the “total pain”: physical, spiritual, psychological, and social problems of the patient and the family. Hospice care can be provided in ﬁve organizational forms: inpatient hospices, home care, day care, palliative care units, and hospital palliative care teams. Last two forms present the integration of hospice care in the healthcare system. Presentation of ethical dimension of hospice care starts with the application of the four basic principles of bioethics. They have speciﬁc expression in the context of hospice care: respect for autonomy is generally associated with the issue of truth-telling and advance directive; beneﬁcence and non-maleﬁcence are focused on the problems of pain control, primarily on the double effect debate; and justice is associated with respect to the rights of terminally ill patients. Justice is discussed also in relation to guaranteeing a minimum of palliative care to everyone in need. Terminally ill patients are seen as vulnerable population in regard to inclusion in clinical research. Euthanasia and palliative care are generally considered as incompatible.
Twentieth century was marked by enormous development in medicine and society and corresponding changes in public and individual values toward increased autonomy. Effective treatment of many life-threatening diseases was discovered and death became to be perceived as a failure of medicine. Life expectancy was extended considerably and chronic noncommunicable diseases started dominating in morbidity. Health systems had to address the new needs of caring for patients with prolonged debilitating diseases who generally preferred to stay at their homes in the last stage of their lives. Against this background, the ﬁrst modern hospices were established as “something between hospital and home” (Saunders 1964).
This research paper presents the main moments of hospices’ development in view of understanding the main characteristics of modern hospices. Speciﬁc terms and organizational models of hospice care are outlined. Provision of hospice services has encountered a wide range of ethical problems, among which are limits of respect for patient’s autonomy, relationships with terminally ill patients, withholding and withdrawing treatment, involvement in research, resource allocation and equality issues, and borderlines of palliative care with euthanasia.
History And Development
There has been a long tradition of caring for ill and dying patients. First hospices were placed alongside the roads of pilgrims and provided shelter and care to the ill travelers and locals. In Europe, with the spread of Christianity, monasteries started to take in the sick, the disabled, and those unable to support themselves. These established shelters were called hospices. Early Christian hospices were focused mainly on spiritual care and were not designated for terminal diseases only. In medieval times, at the time of the Crusades, from 1095 to the end of the seventeenth century, weary travelers found places of refuge in monasteries. Often they were in ill health and many spent their last days cared for by the monks, nuns, and laywomen. The name “hospice” was ﬁrst applied to the care of dying patients by Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in 1842. The name was next introduced by the Irish Sisters of Charity when they opened Our Lady’s Hospice in Dublin in 1879 and St. Joseph’s Hospice in Hackney, London, in 1905 (Galloway 1992).
The founder of the modern hospice movement is Cicely Saunders (1918–2005) whose remarkable biography still inspires many hospice care professionals. She studied nursing, social work, and medicine while developing her philosophy of hospice care. After 1963 Saunders developed the concept of “total pain” including physical, social, spiritual, and psychological problems of the patient and his/her family. Cicely Saunders’ ideas were developed slowly during her care practice for dying patients and were inﬂuenced by her profound relationships with two patients: David Tasma and Antoni Michniewicz. The ﬁrst one left her a sense of how things might be done differently when caring for dying people and 500£ “to be a window in her home planned to welcome these patients.” The death of the second one caused her a profound grief that motivated her through a new sense of authenticity born of loss (Clark et al. 2005).
In 1967, Dame Cicely Saunders established St. Christopher’s Hospice in London, which is still considered as a standard of a modern hospice combining clinical care, teaching, and research. The hospice was deliberately established outside of the National Health System so that specialist ideas and practices could be developed and then channeled back into the system (integrated phase of hospice development). Initially St. Christopher’s Hospice offered only inpatient care, but soon home care, day care, bereavement, and counseling services were developed. The hospice model spread rapidly in the United Kingdom and abroad. In 1977 St. Thomas’ hospital initiated the ﬁrst hospital palliative care team. In the 1980s hospices for children with terminal illness and for AIDS patients appeared. In 1987 palliative medicine was recognized as a medical specialty in the United Kingdom, but most of the other countries are still struggling with the issue of how to relate palliative care to the healthcare system. Based on data from 2013 in United Kingdom, there were 189 inpatient hospices, 272 day care services, 31 palliative care units in tertiary hospitals, 308 hospital palliative care support teams, and 337 home palliative care support teams (Centeno et al. 2013).
Hospice development in the United States was inspired by the lecture of Cicely Saunders held at Yale University in New Haven in 1963. The ﬁrst hospice was founded in Connecticut in 1974. In 1969 Elisabeth Kubler-Ross published her groundbreaking book On Death and Dying, which has had a tremendous impact on hospice philosophy. The book broke the taboo on discussions about death and introduced the theory of the ﬁve stages of grief. Although it was challenged by other authors, the theory found practical application in the organization of palliative care services, namely, psychological support and care in bereavement. In 1972, Elisabeth Kubler-Ross talked at the ﬁrst national hearings conducted by the US Senate Special Committee on Aging on the subject of death with dignity. She made a plea for home care as opposed to hospital treatment and emphasized the importance of spiritual, emotional, and ﬁnancial help to the families of dying patients. The hospice movement in United States spread rapidly after 1982 when Congress included a provision to create a Medicare hospice beneﬁt. Based on data from 2013, about 1.6 million patients in the United States received care in more than 5,500 hospices; noncancer diagnoses (dementia, degenerative neurological diseases, chronic cardiopulmonary diseases, liver cirrhosis, AIDS, chronic liver insufﬁciency) were almost twice as much as cancer diagnoses (NHPCO 2013).
The European countries initiated different types of hospices about a decade after the beginning in United Kingdom: Norway (1976), Sweden (1977), Italy (1980), Germany (1983), Spain (1984), Belgium (1985), and the Netherlands (1991). The ﬁrst volunteer hospice service in Eastern Europe existed as early as 1976 in Krakow, Poland. Hospice movement in Poland is still the most developed among the ex-socialist countries with 137 inpatient hospices, 321 home palliative care support teams, 8 palliative care units in tertiary hospitals, and 8 hospital palliative care support teams (Centeno et al. 2013).
The next notable step in hospice development was the formation of professional organizations of hospice care providers. In 1988, in Milan, the European Association for Palliative Care (EAPC) was established, which by 2005 represented the interests of 50,000 healthcare workers and volunteers across 40 countries. In 1999 the Eastern and Central European Palliative Task Force (ECEPT) followed this lead. Other key organizations include the International Observatory on End of Life Care, Help the Hospices, and the International Association for Hospice and Palliative Care.
Based on the level of development of palliative care, countries fall into one of four groups: (1) no known hospice-palliative care activity, (2) capacity-building activity, (3) localized hospice-palliative care provision, and (4) integration of hospice-palliative care services with mainstream service providers. The EU countries are at the third or fourth level of development. Another approach of classifying countries takes into account quantitative data on the country’s palliative care resources and vitality (as a matter of existence of professionals in the ﬁeld). As such, Great Britain scores 100 % of the possible score of the classiﬁcation. In the group of countries with 50–85 % of United Kingdom’s development are all Western European countries, Poland, and Latvia. Those between 25 % and 50 % are Eastern European countries (Martin-Moreno et al. 2008). Provision of hospice services can also differ within one and the same country due to different socioeconomic developments and infrastructural and/or cultural differences.
The word “hospice” comes from the Latin words “hospes” and “hospitium” meaning to host a guest, stranger, or guesthouse. The term historically is related with the establishment of places where weak, disabled, ill people, and those unable to support themselves were cared for.
The term “palliative” is derived from the Latin “pallium,” meaning cloak or cover. The term “palliative care” may be used generally to refer to any care that alleviates symptoms, whether or not there is hope of a cure by other means.
Nowadays, both terms, palliative care and hospice care, are widely used and often there is confusion between them. Palliative care began in the hospice movement and is now widely used outside of traditional hospice care. Non-hospicepalliative care is offered in conjunction with curative and all other appropriate forms of medical treatment while hospice care is delivery of palliative care to those at the end of life.
“Terminally ill patients” are those patients whose health status can only decline in the near future and whose death is inevitable. Three criteria for determining a patient as terminally ill can be pointed out: conﬁrmed diagnosis of incurable disease, prognosis of death in the near future (6 months), and focus on palliation.
Models Of Hospice Care
The International Hospice Institute and College (now International Association of Hospice and Palliative Care) identiﬁes ﬁve models of hospice care:
- Home care service. The most common model of hospice care exists in three types:
- Advisory services. The advisory team consists of a palliative medicine physician and a palliative care community nurse who assist general practitioners and community nurses in the care of patients at home.
- Practical palliative nursing service is provided daily by specially trained nurses.
- Comprehensive community palliative care services. All care for the terminally ill patient is provided in his/her home by specially trained palliative medicine physicians and nurses. Any necessary equipment is also provided.
- Inpatient services (freestanding hospices).
These hospices are small units of one or two ﬂoors and around 20–30 beds. The buildings are placed usually outside the city to provide a calm atmosphere. Besides patients’ rooms and staff ofﬁces, there are also a chapel, a seminar room for teaching, and a library. What makes any hospice different from a hospital is the holistic, personalized, ﬂexible program and the attitude of the staff.
- Day hospice. Patients are brought from their homes to the Day Unit. They spend the middle of the day there and at the afternoon are taken back home. Usually day hospice supplements home care services. Besides the advantages for patients who become more positive in outlook and consequently experience fewer symptoms, day hospices provide relatives with opportunity to rest.
- Hospital-based palliative care unit. New integrative model of palliative care provision.
- Hospital palliative care team. The team usually consists of a doctor and a nurse with experience in palliative care, social workers, pastors, and physiotherapists as part-time members. The team has no beds on its own but sees patients at request of colleagues in any ward when advice on palliative care (pain, difﬁcult symptoms, psychosocial or spiritual problems) is deemed necessary.
In summary, unique elements of hospice care are family inclusion, intensive symptom control, change of place of care (from hospital to home), multidisciplinary teams (nurses, physicians, social workers, psychologists, rehabilitators, pastors, and volunteers), continuing care after patient’s death, and holistic approach focusing on nonmedical problems (social, psychological, spiritual).
Ethical Principles In Hospice Care
Within the framework of hospice care, basic ethical principles of respect for autonomy, beneﬁcence, non-maleﬁcence, and justice acquire speciﬁc meaning.
Respect for autonomy as fundamental bioethical principle claims that individuals ought to be permitted personal liberty to determine their own actions according to the plans that they have chosen. In case of terminally ill patients, the principle of respect for autonomy ﬁnds expression in truth-telling and information-sharing, on one side, and the possibility for the patient to prepare advance directive, on the other side. The latter is an expression of widening respect for the autonomy principle to cover situations where the patient himself will not be able to express his view about treatment. The issue of truth-telling is still debatable in ethics especially in view of different cultural values. However, in the Western countries, the predominant opinion is in favor of truthful communication of diagnosis and prognosis to the terminally ill patient. Several arguments have been pointed out such as: truth-telling allows further involvement of the patient in treatment decisions including deﬁning goals of care and patient’s concept of “good death”; caring relationships are fostered and introduction of palliative care is done more smoothly.
The principle of beneﬁcence obliges physicians not only to relieve suffering but also to promote the best interests of the patient by enhancing quality of life and peace of mind whenever possible. In terminally ill patients, speciﬁc expression of beneﬁcence is the individual approach toward achieving “good death” in the concrete patient. “… Each death is as individual as the life that preceded it and the whole experience of that life is reﬂected in a patient’s dying .. .” (Saunders 1964).
Since the majority of terminally ill patients are cancer patients, pain is the main symptom to cope with. The importance of using opiates in terminally ill patients without the fear of provoking dependence was underlined already by Cicely Saunders. Many physicians, however, still fear opioids’ side effects and the risk of hastening death of the patient. Application of opioids, in this sense, is related to the principle of double effect: pain relief (desirable effect) and respiratory depression (undesirable effect). The ethical question raised is whether it is permissible to cause the death of the patient as a side effect of bringing about a good result such as pain relief. The dominant paradigm over this issue states that if the primary aim is relief of pain and not to hasten death, it is not regarded as euthanasia and is ethically acceptable. If the intention of opioid application is to hasten death, the procedure will be regarded as ethically unacceptable.
Principles of non-maleﬁcence and justice dictate that patients should not be harmed and that they should be given the care to which they are entitled. Terminally ill patients potentially can be harmed physically or psychologically. For example, blunt, unkind truth-telling that is assaultive in nature is as much a violation of the principles of non-maleﬁcence and beneﬁcence as is any direct action to place the patient at physical risk.
Several documents declare the rights of terminally ill patients. The right to dignity, as expressed in the revised Lisbon declaration, states that “the patient is entitled to humane terminal care and to be provided with all available assistance in making dying as digniﬁed and comfortable as possible and the patient is entitled to relief of his/her suffering according to the current state of knowledge” (World Medical Association Declaration on the Rights of the Patient 2005). “The dying phase must be recognized and respected as an important part of a person’s life…. Physicians should inform patients of the availability, beneﬁts and other potential effects of palliative care” (World Medical Association Declaration of Venice on Terminal Illness 2006).
Relationships With Terminally Ill Patients
For centuries relationships in clinical practice were dominated by the paternalistic model where decisions were made solely by the physicians. With the introduction of the principle of respect for autonomy, the model of partnership and an autonomous model have become more ethically relevant and legally binding for physicians. Both models are intertwined with the issue of communication of diagnosis and prognosis to the patient. Twentieth century ethical norms pushed communication with terminally ill patients into the direction of truth-telling. The exception of this rule was stipulated in the World Medical Association Declaration on the Rights of the Patient as follows: “information can be withheld from the patient when there is good reason to believe that this information would create a serious hazard to his/her life or health” (World Medical Association Declaration on the Rights of the Patient 2005).
The work of Kubler-Ross also had an effect on the issue of truth-telling. Kubler-Ross deﬁned ﬁve stages of psychological reaction of patients after being informed about the terminal character of their illness: denial, anger, bargaining, depression, and acceptance (Kubbler-Ross 1969). People do not always experience all of the ﬁve stages. The model recognizes that people have to pass through their own individual journey of coming to terms with death and bereavement, after which there is generally an acceptance of reality, which then enables the person to cope. Medical professionals can help the patients in this journey once they are aware of the psychological transformation.
Withholding And Withdrawing Treatment
The issue of withholding and withdrawing treatment is often discussed in relation to terminal care and hospices. In this context, prescribed treatments aim at relieving symptoms and providing comfort care – goals different from prolonging life in traditional medical context. On the other hand, withholding and withdrawing symptomatic treatments will hasten death although not intentionally and that brings the moral dilemma of making such decisions.
There is certain moral difference between these two terms. It seems to be easier for some physicians to start treatment and to discontinue it later, if it turns out to be ineffective than to not start it at all. At any case, decisions about withholding or withdrawing treatment present big dilemmas both from the practical point of view (precise judgment of indications) and from the moral point of view. Concerns are mainly related to the question of who is the one to decide and to take the ﬁnal responsibility in these cases.
Other concerns are related to the ineffectiveness of medical treatment and its disproportionality.
Complexity of moral dilemmas requires decisions to be based on understanding of patient’s story and his/her will and not only on quality-of-life judgment. Patients can best judge the value of a treatment in the context of their life. Thus one way of managing uncertainty about withholding and withdrawing treatment is the compliance with patient’s advance directive. However, there is disagreement about its value. In countries where advance directives are legally binding, physicians have to follow them even if they oppose their professional judgment of the situation. In many countries, advance directives are rather advisory documents but not binding.
Artiﬁcial nutrition and hydration are the issues that most often pose the dilemma of discontinuing treatment and euthanasia. There is a consensus in the profession that artiﬁcial nutrition and hydration are vital care and their discontinuation is not acceptable. On the other hand, in the late stages of terminal illness, patients are usually so weak and exhausted that forced nutrition and hydration are related to discomfort and even pain. Discontinuation of nutrition and hydration is related to some positive effects for the dying patient such as decreased edema, increased analgesic effect, and euphoria.
Withholding and withdrawing mechanical ventilation and hydration is not widely supported in the context of hospice care. These treatments are aiming at the goal of providing comfort and enhancing quality of life and not primarily prolonging life. On the other side, forgoing treatment will hasten the death of the patient, although not intended, which is incompatible with hospice philosophy. There has been intensive debate over the moral difference between forgoing treatment and euthanasia. Healthcare professionals generally defend such moral differences in contradiction to many bioethicists. The argument focuses on consequences versus intentions of the act.
Issues Of Resource Allocation
Needs of palliative care nowadays are higher than in the past. This trend combined with the moral imperative to utilize health resources in justiﬁable ways poses difﬁcult ethical dilemmas to health professionals (Callahan 2000). In traditional medical practice, the goal is health restoration and patient’s recovery. These are not achievable in palliative/hospice care. What is the goal of palliative care then? There are speciﬁc goals like pain and symptom control, but even the best care cannot guarantee complete physical and spiritual comfort of dying patients. Thus it seems that there is no universal condition toward which palliative care aims and which can determine its effectiveness. Palliative care needs assessment under these conditions is rather complicated.
In most Western societies, there is a moral obligation to provide a minimum of palliative care. It is rooted in the societal values of beneﬁcence and justice. Suffering is distributed unequally and palliative care presents one of the means to overcome this inequality through offering comfort to everyone in need. If there is a minimum of palliative care, what does it include? Is there an obligation to provide more than the minimum? Current view over these issues states that every health professional should be qualiﬁed in provision of information and symptom control with special attention to psychological and spiritual problems.
Roles of health professionals in solving resource allocation problems cover not only individual decision-making in speciﬁc cases but also provision of information to health administration about necessary services to be included in the minimum of palliative care. Once the minimum is guaranteed, higher level of palliative care can be discussed.
At the level of micro-allocation of resources, the available resources should cover as many patients in need as possible. Since the demand of palliative care is increased, decisions on rationing should be based on ethically sound criteria. Morally unacceptable criteria for resource allocation are gender, ethnicity, social standing, religion, and patient’s lifestyle.
Inequality Of Palliative Care Provision
The initial focus of hospice care services on cancer patients has changed increasingly. Patients with conditions other than cancer have physical, psychological, social, and spiritual needs that can be adequately addressed in the framework of hospice care. In line with discussions of resource allocation and justice in palliative care provision are the questions raised about the equal access to hospices of certain groups such as elderly, children, people with intellectual disabilities, rural population, minority groups, and the poor (Cohen and Deliens 2012).
Research Ethics In Palliative Care
In palliative care, we need research which is designed to: make clinical observations, optimize the quality-of-life situation of the incurably ill patients, optimize the social support by relatives and caregivers, and strengthen the remaining possibilities for incurably ill patients to autonomously control some procedures in their own bodies as well as in their surroundings.
According to a common pharmaceutical practice but not an ofﬁcial guideline, seriously ill patients are enrolled into trials if they meet the following criteria: life expectancy of more than 3 months, consent to trial, and no other concomitant life-threatening diseases (Illhardt and Ten Have 2002).
Signiﬁcant ethical problems arise in relation to research ethics in hospices:
- Should we include terminally ill patients in clinical trials of new medicine? Two situations are possible:
- If the aim of the clinical research is improvement of patient’s quality of life, certain beneﬁt will be imposed on the patient, and his/her inclusion is desirable when the risk of harm is minimized.
- If the clinical trial is in the ﬁrst phase of an experiment about cancer-related effect, beneﬁt to the patient is dubious, and the patient’s involvement is potentially unacceptable since risk of harm is too high.
- Obtaining valid informed consent is related to the provision of adequate information to the patient about: the aim, foreseeable risks, expected beneﬁts, available alternatives, conﬁdentiality, voluntariness of participation, and guarantee of care independent of patient’s consent of participation in the experiment.
Terminally ill patients belong to the so-called vulnerable populations in relation to research since they have lost hope of cure and could be easily persuaded to be included in a study with inconsiderable beneﬁts to them. Additionally, terminally ill patients are often physically exhausted, depressed, and with cognitive disorders, and thus they are often unable to assess the provided information. Incurably ill patients often consent to be involved in research projects from which they receive no beneﬁts, simply out of a sense of altruism.
Participation in clinical research might prevent patients from receiving adequate therapy since this therapy can produce invalid results of the drug trial. No physician is justiﬁed in refusing needed and effective therapy to a patient. A moral dilemma is created when the therapy is not proven to be effective (experimental). The basis for such decisions is the concrete risk-beneﬁt analysis. Studies that are likely to provide only small beneﬁts can be justiﬁed if they also bear very low risks.
We have ethical responsibility to protect terminally ill patients from inclusion in research which is not in their best interest. At the same time, patients who are competent and well informed should have the right to take their own decisions concerning research participation:
- Research must be done in the context of the optimal treatment, including that of incurably ill patients.
- Each study must evaluate the status of patient’s quality of life.
- Quality-of-life assessment not only should cover the activities of daily living but also should include other existential dimensions, like the effectiveness of coping process, supporting persons, and ideas.
- Research without this assessment ought not to be done (Illhardt and Ten Have 2002).
Euthanasia And Palliative Care
Increasing knowledge and expertise in palliative care has led to claims that the provision of effective palliative care services renders discussion about the introduction of euthanasia unnecessary. From a historical point of view, when Cicely Saunders established St. Christopher’s hospice in 1967, it was partly out of a moral discomfort with the tendencies in British society in favor of legalization of euthanasia. Good palliative care is consequently seen as the moral answer to the immorality of euthanasia.
Several arguments have been pointed out in support of the incompatibility of euthanasia and palliative care:
- Accepting euthanasia may be dangerous in the light of the often so ambiguous and multilayered euthanasia requests of patients. In the context of good communication, euthanasia requests may amount to something very different than a request to have one’s life ended like during the burden of symptoms of a terminal phase, feeling oneself a burden to others, and having no expectations of recovery (Sahm 2000). The more palliative medicine takes care of these problems, the more the causes for requesting termination of life will disappear.
- Euthanasia goes against the basic ethical principles in medicine (beneﬁcence and non-maleﬁcence) and consequently is incompatible with palliative care.
- Participation in euthanasia by hospice programs and caregivers would contravene three basic tenets of hospice’s mission and philosophy. Provision of a lethal medication would hasten death. Death would occur not as a result of a natural life process, but through medicalized control and scheduling. The family could be excluded because the measure does not mandate family involvement (or even notiﬁcation) in the patient decision-making process.
- Last but not least, we have to take into consideration the effects on the personnel. For the hospice team, it would be unsatisfying if the patient, after having cared for him/her for a long time, would have to be transferred to another institution in order to die there (Janssens 2001).
- Euthanasia hinders development of palliative care. If it is freely available, in all more difﬁcult cases, it would be an easy way out instead of developing better palliative care options.
On the other side, some authors claimed that euthanasia and palliative care are not incompatible but just the opposite – euthanasia can be seen as morally justiﬁable means of last resort when the pain or suffering of a patient becomes unbearable and when all other alternatives are exhausted (Ganzini and Block 2002). It is also claimed that the administration of morphine in the context of palliative care, which purportedly hastens death, is morally and ethically not different to euthanasia. Also, withholding or withdrawing treatment that is futile, overly burdensome, and of no beneﬁt to the patient (which is ethically permissible) is morally no different to euthanasia (Foley 1991).
As a whole, arguments in favor of the standpoint that palliative care and euthanasia are mutually exclusive are more and seem to be stronger than the arguments for the compatibility between them.
Hospices appeared in time of enormous technological advancement of medicine. They answered the need of compassion and a personal approach to a speciﬁc group of patients with incurable diseases. Soon after their establishment, hospices gained recognition worldwide. Ethical dilemmas accompanied hospice development as a consequence of the drive to deﬁne what hospice care should comprise of. Although the debates are still alive, there is certain consensus upon truth-telling with respect to the autonomy of the terminally ill patient, refusal of euthanasia performance in hospices, protection of hospice population from abuse in clinical research, and safeguarding minimum of palliative care for everyone in need.
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- World Medical Association Declaration of Venice on Terminal Illness. (2006). Adopted by the 35th World medical assembly, Venice, October 1983 and revised by the 57th WMA General assembly, Pilanesberg, October 2006.
- World Medical Association Declaration on the Rights of the Patient. (2005). Adopted by the 34th World medical assembly, Lisbon, September/October 1981, and amended by the 47th WMA General assembly, Bali, September 1995, and editorially revised at the 171st council session, Santiago, October 2005.
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- Smith, F. and Himmel, S. (2013). Changing the way we die: compassionate end of life care and the hospice movement. Berkeley, United States, Viva Editions.
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