Palliative care: psychological, social and spiritual aspects

Abstract

Palliation is a model of care focused not only on the medical procedures that this term implies, but on a multidisciplinary approach addressed to the body mind-soul triad, bringing together specialists from different fields; medicine, psychology, sociology, theology. Thus, although palliative care refers to the patient in the terminal state, these specialists will address also the patient s family, providing support for this difficult situation.

Without detailing the medical and ethical aspects of palliative care, our paper focuses on presenting the psychological, social and spiritual coordinates, often neglected in the approach of terminal patients.

We thus try to demonstrate the necessity of a holistic approach, in the spirit of the integrative medicine, by which we can ensure that these patients will have what is traditionally, medically, psychologically, spiritually und philosophically known as “good death”: a peaceful death, characterized by soul serenity, reconciliation with other people and God, without physical discomfort; a death which occurs in a lucid state, being close to those who love you and whom you love. Everyone deserves to go through the death process with dignity and peace of mind.

 

Death is a natural and inevitable part of life. For some, this symbolizes a pessimistic yet worthy process, while for others it is greeted with pain, anxiety and suffering.

Health professionals must understand the fears and concerns of patients and must reflect on their option for the place they wish to die in, thereby respecting patient autonomy. Wishes pertaining to terminal states can be expressed by a competent patient either by personal plea or by advance directions (living will). If the patient cannot make the choice, these options belong to the legal representative or their dependents, depending on the surrogate decision- making mechanism.

There is an urgent need to train and increase the performance of medical professionals specializing in pain management and palliative care. It is also absolutely necessary to develop legally based ethical policies and procedures on withdrawal/discontinuation of artificial life support.

The term “palliative care” refers to the care of people suffering from life-threatening diseases for which there is no etiological treatment current medicine was able to find; it is a type of care focused not only on the medical-somatic ranges, but also on the social, psychological and spiritual dimensions. It is closely associated with the development of hospice services, being a type of care that has operated and operates still beyond the narrow limits of the formal health system. It relies on the involvement of local communities, charitable and philanthropic organizations, and the efforts made by volunteers [1].

The World Health Organization has defined palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care is about controlling pain and other troublesome symptoms. It views death as a normal process, without intending to hurry or postpone it. It provides not only a patient support system, but also an aid for their families, which helps them cope with the situation both during the patient's illness and after his/her death.

This is why an exclusively medical type of approach to terminal states (and to palliative care) is not enough; in order to fully understand and characterize this kind of care, a holistic approach is needed, focusing on several coordinates: medical, ethical, psychological, social and spiritual-each of them with an equally important role in ensuring the quality of life of these patients.

Communication plays a highly important part in the complex assistance of the terminally ill. The news of the worsening disease and of the inability to stop the general condition degradation produces a strong emotional burden on both the patient and his or her loved ones.

If the truth is shared it can however contribute to the awareness of the increasingly limited remaining time, in order for them to be able to use it as efficiently as possible.

Communicating bad news is a process similar to negotiation. The patient has the right, but not the obligation, to find it out.

 

The medical approach

The purpose of palliative care is to relieve the patients’ suffering and to improve their quality of life for the remainder of their lives. The palliative care team closely works together with the treating physician to ensure that palliative practices complement the ongoing active therapies aiming to control pain and relieve symptoms.

Medical treatment is provided by a doctor who is a palliative team member and who has the role of prescribing medication and of coordinating all curative and recovering maneuvers.

The care often implies collaborating with a psychiatrist, who will address the psychopathological disorders that can accompany terminal states. One or more nurses will also contribute to the design of a specific nursing plan tailored to the needs of the patient and his/her family [3].

 

Ethical issues of terminal and palliative states

In addition to the fact that terminal patients are considered to belong to the vulnerable population groups, their moral-ethical and deontological approach [4] should also take into account other specific aspects:

-    The issue of informed consent may be approached differently, depending on the psychic capacity of these patients: for those who are capable, they cover all specific legal and deontological provisions, while in the case of the incapable; the surrogate decision-making mechanism needs to be implemented. Respect for the fundamental principle of self-determination is of utmost importance for these patients.

-    Hospice care has the primary objective of ensuring the highest quality of life in the last months of a terminal illness, which means recognizing that the disease is indeed terminal and that no further efforts will be made to heal the patient. This philosophy reflects a therapeutic approach focusing on the patient rather than the disease [5].

-    The principle of equity (distributive justice) implies an equal distribution of health resources among all members of society without any discrimination. Under this principle, terminally ill patients have the legal right to receive healthcare of the same quality as to those with healing potential. On the other hand, in true utilitarian spirit, one may ask: “To what extent is wasting medical resources on terminal patients just?”, given that these resources could be more efficiently used in other areas of health, or for treating other sick patients, that may be cured [6].

-    In the same context, we may raise the ethical issue of medical futility, bearing no useful purpose and without favorable short or long-term effects, especially in the case of terminal comatose patients, surviving in a vegetative state, who are artificially kept alive [7-9].

-    There are also ethical debates on the terminal patient’s right to know his or her diagnosis and prognosis or, on the contrary, the right to refuse learning about medical information leading to patient suffering; in addition, the right of the family to learn this information versus the patient’s right to request that the families remain unaware is also debated [10]. The provisions under Patient’s Rights Law no. 46 from 2003 have provided a necessary legal clarification for most of these issues [11].

The patient’s right to refuse cardio-pulmonary resuscitation by means of advance directives is a widely recognized form of self-determination, taking the shape of DNAR (do not attempt resuscitation), DNR (do not resuscitate), or no CPR (no cardio-pulmonary resuscitation) [7, 10].

-    Last but not least, there is a multitude of attitudes for and against suicide and/or euthanasia, ways of ending one’s life, that are seen by some as applicable in the field of terminal states, where medical science cannot help and where the argument of the right to die with dignity, before severe deterioration, still finds supporters [7, 9, 10].

 

Psychological Aspects

The literature highlights some of the key elements to be considered in the psychological assistance of a person in the terminal phase:

-    Encouraging (and sometimes even teaching) the patient and his/her family to engage in communicating their important internal content;

-    Adequate handling of the consequent grief, which allows both the patient and the family to prepare for imminent death [12];

-    All specialists involved in assisting a terminal patient must base their interventions (irrespective of their nature) on the following aspects: the right to informed consent, the person’s autonomy and dignity, the patient’s subjective well-being and the social responsibility the specialists have to face [13];

-    The regression in which the terminal patients slip, makes them particularly sensitive to non-verbal communication [14].

De Hennezzel (1997) emphasizes the importance of narrating one’s own life before death (quoted Skolka, 2004) [14] and shows that there is a direct link between the most important act – that of giving shape and significance to life – and self-disclosure. Thus, all psychotherapeutic techniques (interpersonal psychotherapy, existential therapy, crisis intervention, supportive psychotherapy) can contribute to the integration of disease into one’s life experiences, which can allow the acceptance of the illness with everything it encompasses. It can help the patient better adapt to diagnosis and treatment, to the consequences of illness, in order to live as fully and intensely as possible during his or her remaining lifetime [15].

Non-verbal psychotherapeutic approaches are extremely useful especially for terminally ill patients who can no longer or no longer want to interact with others. Clinical data attests that touches, loving cares lessen anxiety and pain.

Risko (1995) asserts that if the dying can live a basic sense of trust, they can tolerate pain more easily. Experiencing this sense of basal trust is facilitated by complex non-verbal psychotherapeutic techniques (quoted Skolka, 2004) [14].

The family of the ill person often faces identical difficulties in psychologically adapting to the terminal condition of the loved one. In addition, in order to care for the terminally ill, family members themselves need psychological support; the feeling of good care given to the sick person will facilitate the natural unfolding of the mourning process and will prevent difficult grieving.

Specialists admit that if the patient is allowed to spend the last period of his life in a loving and familiar environment, then he needs less adaptation efforts [14].

It should not be neglected that the majority of incurable people live within a high degree of social isolation, whose main reason must be sought in the discomfort, the fear and the feeling of threat experienced by healthy people in close proximity to illness [16, 17]. It is difficult for the healthy person to get in direct contact with the suffering and the terminal disease, because it obliges to notice one’s own vulnerability and fragility in the face of death.

The ultimate goal of palliative care is to achieve acceptance of the lethal conclusion with psychological equilibrium. W.H.O. defines “a good death” as taking place in the absence of additional stress and suffering not only experienced by the patient, but also by the family and those who help them, aiming at striking a balance between the wishes of the patient and his family, on the one hand and the clinical, cultural and ethical standards, on the other [12].

Pool considers that “good death occurs at the right time, in the right place, after a full life, the person predictably reaching his own end, in peace, surrounded by his loved ones”. (Quoted Skolka, 2004). Based on literary data, Pool synthesizes three great features of good death:

-    Easy, painless, quiet and dignified death with a short duration;

-    Ensuring family involvement in the care of the patient: good interpersonal relationships, adequate communication, solving as many conflicts as possible – all this revealing the patient’s ability to overcome social isolation, to actively participate in social interactions despite his condition;

-    The patient’s autonomy and control over the death process.

 

Social Coordinates

In view of the above, there is a clear need for microsocial involvement on behalf of these patients’ families. Ensuring a protective climate within the family environment is essential for developing coping mechanisms in the face of terminal suffering.

However, faced with this difficult situation, the patient’s family itself is in danger of becoming vulnerable. In the absence of a macro-social system to help these patients and their families from logistical, institutional, financial and adequate human resources perspective within a well-defined legislative framework, their task becomes impossible.

In spite of the beliefs that the process of passing away is best done in the terminal patients’ homes, thus in a familiar environment, with loved ones by their side, it seems that hospice institutions offer a viable alternative, considered by many superior in many ways. Although not in a familiar environment, the patients will not feel isolated, being alongside people who experience similar understandings and who comprehend their suffering. Within these institutions there are multidisciplinary teams of palliative specialists who are knowledgeable about the phenomenon and who receive targeted training in this regard. They thus facilitate a holistic approach to the terminal patient. At the same time, the family, relieved of the burden of dealing every moment with this by definition stressful situation, is facilitated (and even encouraged) with access to the institution in order to be able to be with the suffering one.

However, statistics show that, in developed societies, a large proportion of deaths occur in hospitals or in hospice institutions rather than at home: Sweden 79%, Canada 73%, Japan 67%, United Kingdom 66% USA 60%, France 50% (18). It is therefore no wonder that “nowadays, agony is in many ways more terrifying, more seamless, more mechanical, and more devoid of humanism” than ever in the history of medicine (Kubler-Ross, 1988, p. 35, quoted Skolka, 2004) [14].

 

The spiritual dimension of palliative care

The therapeutic approach of terminal patients should be in the spirit of integrative medicine, and treatment should be directed not only to the body and mind but also to the soul.

In the particular situation of these patients, it is not enough to solve the strictly medical somatic and psychological issues; they need psychological counseling and, above all, spiritual and religious support – a treatment for the soul.

Although throughout our lives we tend to forget that death is a gift we cannot say not to, due to our mortal nature, “religion teaches that death exists, that we must meet it prepared, with less fear to leave life behind when our time comes and to embrace it more serenely, in the hope of another existence” [19]. Terminal suffering states are “a foretaste of death”, a situation in which «the child’s global why? returns to the adult» [20].

We must not forget that the needs of the terminal patients, adapted by Ebersole and Hess after the pyramid of human needs of Abraham Maslow, peeks with the need for spiritual fulfillment, including accepting and overcoming this inevitable stage, and especially understanding the meaning of death [6]. Spiritual-religious counseling is extremely important in this respect, allowing the sufferer to realize that death is just a threshold before moving to another existential dimension.

Religious assistance and counseling should also be directed to the family of the person suffering from terminal illness, both during the illness itself and after his/her death, during the mourning period.

 

Conclusion

Terminal patients need complex multidisciplinary care for the body-mind-soul triad in a microsocial (familial) and macro-social (institutional) context, appropriate for their needs.

Only the holistic approach, in the spirit of integrative medicine, offered by palliative care, is able to fully achieve this desideratum. In this way we ensure that these patients will have what is traditionally, medically, psychologically, spiritually and philosophically understood as “a good death”: the tranquil one, characterized by soul serenity, reconciliation with one’s peers and with God, without physical discomfort, characterized by lucidity, alongside those who love you and whom you love.

 

The Authors:

PETEANU Ioana [1]

TOPÎRCEAN Elena [2]

[1] Faculty of Medicine Sibiu, Forensic Department of Sibiu County (ROMANIA)

[2] Faculty of Medicine Sibiu, Forensic Department of Sibiu County (ROMANIA)

 

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