The place and role of holistic therapy in the palliative treatment of oncological patients in terminal phase – the result of a personal experience

Introduction

Palliative care aims at the active and total care of patients whose disease only responds to curative treatment, and the evolution of modern palliative care implies its integration into the continuous process of treatment and complex assistance of the incurably ill, from the diagnosis phase of an incurable disease or with limited prognosis.

Holistic therapy treats not only the physical aspects of the patient but, above all, treats the patient as a person with all the inner conflicts related to his illness (psychic, social and spiritual).

Holistic therapy involves a multidisciplinary team with competence in palliative care, with the training necessary to satisfy physical needs, as well as psychological, spiritual and emotional support for patients, and provides support for families, including during the period of pathological mourning⁽¹⁾.

Materials and method

The personal study carried out by the authors of this article included patients with oncological disease in the metastatic stage, with a reserved prognosis, declared outside the oncological therapeutic resources, who were hospitalized in the palliation center, based on the recommendation of the oncologist for symptomatic treatment and support of vital functions, respectively “best supportive care”.

Thus, the major selection criterion of the group of 28 patients was the stage of the neoplastic disease, all patients included in the study presenting three or more synchronous metastatic locations. In the case of patients with metastatic disease with three or more synchronous metastatic locations, the primary tumor location was predominant, represented by bronchopulmonary cancers (nine patients) and digestive tube cancers (six patients).

The patients with the primary tumor location as bronchopulmonary cancers presented bone, lung, liver or adrenal metastases.

The patients with the primary tumor location as digestive tube cancers (colon cancer – three patients, and pancreatic cancer – three patients) presented bone, lung, liver, peritoneal or lymphatic metastases. The patients with three or more synchronous bone metastatic locations (three patients) or brain metastatic locations (three patients) with an unspecified starting point were also included in the study.

At admission, the patients presented an altered general condition, with a performance status of ECOG 3, with limited self-care capacity, requiring help in self-care and carrying out daily activities, or with ECOG 4, being immobilized in bed. 

Also, subjectively, the patients complained of pain of VAS (Visual Analogue Scale) intensity of 7-10, which required the initiation or continuation of third-degree opioid treatment, the state of suffering due to the painful complaints making it difficult for them to cooperate with the medical team, and with a precarious relationship with family and friends.  

The objectives of the study were to reveal the role of the doctor in addressing the raised medical issues, as well as the role of psychospiritual counseling in solving the psycho­emotional conflicts of the patient, with a possible impact on the evolution of the disease and on treatment compliance. 

The purpose of this work is to raise awareness on the role the holistic approach or holistic therapy in the therapeutic management of the oncological patient in the terminal phase.  

As such, the consequences in the evolution of the neoplastic disease and compliance with treatment were followed in the three spheres of intervention of holistic therapy, interventions carried out by the professionals within the multidisciplinary team:

• Intervention of the doctor. 
• Intervention of the clinical psychologist. 
• Intervention of the spiritual counselor.

The doctor’s intervention

The therapeutic protocol of the terminal phases requires the recognition of symptoms evocative of the end of life and their treatment, with the aim of ensuring the quality of life and the patient’s dignity in the face of death, as well as preparing the family to accept the imminent death.

Within the care plan, there were evaluated daily the 14 needs of the patient, thus detecting the physical aspects, respectively the symptoms and signs of the disease at the beginning and their fluctuation during the evolution of the disease until the end of life. 

Also, by evaluating the 14 needs, there were detected the psychoemotional experiences of the patient and the way of relating with his family, with an impact on treatment compliance. The daily fluctuating symptoms of the disease detected from the evaluation of the 14 needs of the patient were noted in the patient care plan, by the doctor and the entire medical team that participated in the patient’s care (nurses, medical assistants).

Thus, the medical team evaluated the following needs:

1. the need to breathe

2. the need to eliminate

3. the need to feed and hydrate

4. the need to sleep and rest

5. the need to be clean or cared for and to take care of the skin and mucous membranes

6. the need to move and have a good posture

7. the need to communicate

8. the need to dress or undress – addiction score 

9. needs related to the practice of religion, the patient’s rights, spiritual counseling

10. the need to maintain the body temperature within normal limits

11. the need to avoid dangers 

12. the need to be useful

13. the need to recreate

14. the need to learn to manage one’s health.
 

The evolution of these needs was recorded daily in the patient’s care plan by the medical team, and the intervention of the doctor and of the medical team under his coordination was on the physical aspects, respectively the symptoms and complications that appeared in the evolution of the neoplastic disease, and in ensuring the care of the patient and the quality of life.

The needs that were monitored daily by the medical team (doctors, nurses, medical assistants) were:

1. the need to breathe

2. the need to eliminate

3. the need to feed and hydrate

4. the need to sleep and rest

5. the need to be clean or cared for and to take care of the skin and mucous membranes

6. the need to move and have a good posture

8. the need to dress or undress – dependency score

11. the need to avoid dangers

14. the need to learn to manage their health.

The needs related to psychoemotional and spiritual issues recorded in the care plan were addressed by the other members of the multidisciplinary team, respectively the clinical psychologist and the spiritual advisor.

The intervention of clinical psychologist

The clinical psychologist assessed daily – on the one hand, in the direct approach with the patient or his family, and on the other hand, by analyzing the changes signaled by the medical team in the patient’s care plan – the needs whose solutions fell within his scope of activity:

7. the need to communicate

12. the need to be useful

13. the need to recreate.

The types of psychotherapy used in the treatment of psychoemotional disorders for cancer patients were:

• one-on-one discussion with a psychologist
• couple or family therapy
• therapy group.

During the one-on-one discussion of the patient with the psychoemotional counselor, the approaches were individualized for each patient, and the clinical psychologist’s intervention for the patient with cancer in the terminal phase included:

1. Cognitive-behavioral intervention.

2. Focusing attention on the person, not on the disease and its evolution.

3. Understanding the basic needs of the patient.

4. Offering hope.

5. Discussion with the patient about the end of life.

Through couple or family therapy, the psychotherapist helped the patient and his family to realistically analyze the evolution of the disease and the imminence of death, creating the possibility of the patient’s relationship with the family and the loved ones at the end of life.

The support groups where held together with the patients’ doctors with competence in palliative care, as well as doctors from related specialties, depending on the underlying disease and the comorbidities associated with the neoplastic disease, respectively oncology, diabetes and nutritional diseases, cardiology, neurology or psychiatry.

The psychotherapist discussed the fears and problems raised by the patients with the aim of obtaining realistic answers related to the evolution of the neoplastic disease and the influence of the associated comorbidities, and offered the possibility of learning from the experiences of the patients who faced the same kind of medical problems.

The intervention of the spiritual advisor

The spiritual advisor or the priest assessed, through the direct approach with the patient or his family and through the analysis of the changes signaled by the medical team in the patient’s care plan, the problems whose solution within the holistic therapy fell within his competence, respectively the need related to the practice of religion, the patients’ rights and spiritual counseling.

Results

The doctor’s intervention

The monitoring of the patients’ needs by the medical team allowed the description of the clinical picture characteristic of the evolution of the disease until the end of life.

Thus, depending on the assessed need, the symptoms or signs of the disease were detected, progressively installed:

1. the need to breathe – respiratory dysfunctions such as dyspnea, polypnea alternating with bradypnea, stertorous breathing;

2. the need to eliminate – urinary dysfunctions (oligoanuria, hematuria or black urine) and decreased intestinal transit (constipation) or abolished;

3. the need to feed and hydrate – lack of appetite, the impossibility to feed or hydrate;

4. the need to sleep and rest – drowsiness and marked asthenia;

5. the need to be clean or cared for and to take care of the skin and mucous membranes – dryness and pallor of the skin and mucous membranes, exfoliation of the skin, skin lesions and ulcers;

6. the need to move and have a good posture – the reduction of the degree of mobility or the definitive immobilization in bed with the appearance of decubitus injuries and bedsores;

8. the need to dress/undress – dependence score (major limitation or the impossibility of carrying out daily activities);

10. the need to maintain the body temperature within normal limits – changes in body temperature (fever alternating with states of hypothermia);

11. the need to avoid dangers – agitation, delirium, visual and auditory hallucinations, shortened periods of consciousness, comatose state;

14. the need to learn to manage one’s health – lack of interest in one’s own person.

In the therapeutic management of the terminal phase, emphasis was placed on the support of vital functions and control of serious symptoms: pain, dyspnea and stertorous breathing, agitation and delirium. Pain was the most common symptom for all patients in the terminal phase included in the study, who benefited from oral opioid medication, but at the end of life, due to the patients’ inability to swallow, it was necessary to simplify the therapeutic scheme by switching from the administration of opioid medication per os to subcutaneous or in the form of transdermal patches.

The parenteral administration of nutritional supplements was instituted for all patients with the aim of restoring food intake, which, however, at the end of life, has no impact on the patients’ survival, offering only mental comfort that there is still a therapeutic hope, being administered only at the request of the patient or of the family.

But at the end of the patients’ life, through the impossibility to feed or hydrate, it led to the installation of severe dehydration syndrome, with an impact on the quality of life, which required the continuation of parenteral hydration along with physical measures to care for the skin and mucous membranes, and oral cavity hygiene.

Despite the fact that all the beds were equipped with electrical actuation that makes it more permissible to mobilize the patient and practice breathing exercises, tapping, as well as anti-slip mattresses, still the definitive immobilization in bed, at the end of life, favored the appearance in most patients of decubitus injuries and bedsores, which in some situations even required the intervention of a surgeon to remove and clean the injuries.

Symptoms characteristic of the end of life, such as wheezing, anuria, agitation or delirium, or episodes of loss of consciousness until the onset of coma required probing the patients, the administration of benzodiazepines and major analgesics, and cardiorespiratory support through oxygen therapy.

The therapeutic plan also included instructions on the preferences of the patient regarding care at the end of life and the registration of a legal representative who can ensure that the patient’s wishes are respected when he is no longer able to communicate them. The quality of legal representative emerged from legal documents or in the case of another person who was not a first-degree relative, the quality of legal representative being documented through a long-term medical power of attorney.

In this stage, the doctor in collaboration with the social worker highlighted the legal aspects, as well as the material and financial resources available to the patient from the family and the possible needs that are imposed and the support that could be offered to the families in the post-mortem period, without raising the problem of family abandonment by the patients who were included in the study.

The patient had to express in writing his wishes and expectations regarding who is able to make decisions when he no longer has this capacity.

The most frequent question that was asked by the patient’s family in the terminal phase was: “How long will he live?”, being necessary for the doctor to explain in the most simplistic way possible the meaning of the appearance of the symptoms characteristic of imminent death, namely the change in the respiratory rhythm, oligoanuria, the change in the color and temperature of the skin, the onset of restlessness, agitation or delirium, followed by drowsiness and comatose state, explanations that have helped the family in deciding what they have to do in the time they still have to spend with the patient.

A doctor can overestimate the survival of a patient, because he got close to him and does not accept the end of life or feels it as a professional failure, and thus he can delay the moment of palliative care specific to the last moments of life. In this regard, it is helpful to consult another doctor from the medical team, who may have a different medical opinion.

On this aspect, the medical alternatives at the end of life were discussed within the medical committee individually for each patient.

As such, through the intervention of the doctor and the medical team, the physical aspects were treated and the ethical principles underlying palliative care were respected:

• respecting the patient’s autonomy, by fully and correctly informing the patient about the treatment and the evolution of the disease;
• minimization of side effects, which involves avoiding treatments and therapeutic maneuvers without clinical benefit and which can affect the patient’s quality of life;
• beneficence, which involves helping the patient to decide on the choice of beneficial therapies and which do not affect his quality of life;
• justice – fair and just use of available therapies.

The intervention of the clinical psychologist

The psychotherapist analyzed the changes signaled by the medical team in the care plan, within the needs that came under his scope of intervention:

7. the need to communicate

12. the need to be useful

13. the need to recreate.

Through the direct interview with the patient, the psychological assessment of the patients was imposed through different assessment methods: clinical interview, observation, HADS scale, Beck Inventory, GDRS scale, PHQ-9 Questionnaire, to identify permanent somatic and psychological, cognitive symptoms. Thus, it was noticed in the patients the lack of self-esteem, affective mood or irritability, and their experiences and fears related to the disease, respectively anxiety or depression, were detected.

The psychological counseling, based mainly on the clinical interview and observation, was focused on the relief of psychological suffering, through five types of interventions by the clinical psychologist.

1. Cognitive-behavioral intervention

Through this intervention, the psychotherapist clarified certain fears due to the distorted interpretations of the symptoms and signs of the disease by the patient, giving them a more realistic touch, and this therapy offered the patient the possibility of regaining the feeling of control, especially the control of pain, but also of anxiety.

By controlling the pain, the patient becames compliant with the treatment and it was no longer necessary to continuously increase the doses of opioid medication, with the implicit minimization of toxicities and the improvement of the quality of life.

By controlling fear and anxiety, patients became confident and calm regarding the administered therapies, eliminating the risk of developing severe psychiatric pathologies.

2. Focusing attention on the person, not on the disease and its evolution

It is an intervention in which the psychotherapist listened to the patient, letting him talk without interruptions and without comments about everything he wanted, to find out what he feels and what are his dilemmas and fears, as well as his expectations and wishes, including those in the face of death.

Understanding the patient’s emotional experiences and his wishes at the end of life, the psychotherapist tried to channel the patient’s attention on the only important person, without having the disease and its evolution relevant. The patient thus regained his self-esteem, a primary aspect for the quality of life.

3. Understanding the patient’s basic needs

The psychotherapist emphasized the patient’s desire to decide what he wants for his personal benefit at the end of life, since the attitude of the family to protect him or to exclude him from therapeutic decisions at the end of life would mean depriving the patient of his dignity.

As such, the patient regained his sense of usefulness in his family, thus improving his relationship with his loved ones, and regaining his human dignity in the face of death.

4. Offering hope

The psychotherapist analyzed in the discussion with the patient the possibility of the existence of therapeutic alternatives, respecting his desire in case of uncertainty about the correctness of the therapeutic decision to consult another medical opinion but, at the same time, he made the patient aware of the realistic expectations of the therapeutic benefits and the inherent evolution of the disease.

5. Discussion with the patient about the end of life

The psychotherapist during the counseling made the patient aware of the fact that he will die soon, in order to give him the opportunity to solve all the problems of his life and to relate with his family.

Through couple or family therapy, the patient and the family were helped to resolve their misunderstandings and ask for forgiveness, and the patient no longer felt that he was a burden to others. Having listened to his wishes and ideas, the patient regained his desire to communicate with his loved ones and to be emotionally useful for them, and the family saw the patient as someone dear and pleasant, and they wanted to be with him until the end of his life. Thus, the patient’s relationship with the family at the end of life was stronger than before.

Support groups were the place where patients could share their feelings, they could learn experiences from patients who were facing the same kind of problems, thus learning to manage their reactions and symptoms, and this gave them a sense of belonging, thus avoiding isolation, insecurity and helplessness.

The consequences of the intervention of the clinical psychologist consisted in:

• pain control and treatment compliance
• control of anxiety with the elimination of the risk of developing a severe psychiatric pathology – regaining self-esteem
• regaining the feeling of usefulness
• the desire to communicate and relate with the family
• regaining the feeling of belonging while avoiding isolation and helplessness
• acceptance of the end of life. 

Solving these psychoemotional experiences increased the degree of treatment compliance and had a major impact on the quality of life of the patient in the terminal phase, who died in dignity, supported by family and the loved ones.

The intervention of the spiritual advisor

The counseling given by the priest was based on the principle of consolation through prayer, since patients at the end of life feel the need for forgiveness and prayer, and the priest encouraged the patients to pray whenever they felt the need for peace and comfort.

Confession with the sharing of last thoughts and fragmentation was requested by all patients at the end of life.

Reconciliation with oneself and closeness to God offered the patients a state of peace at the end of life, offering them the possibility of a good relationship with the family who had the chance to spend their last moments with the one who was going to lose them, finding out their last wishes and advice.

The spiritual confession reopened another vision, as the patients redefined their place in their family, becoming important to their loved ones through the revealed advice and confessions, important even beyond death. For the family, the significance of the loss of the loved one never disappears and decreases in intensity in two or more years, as long as the process of adapting to life without the loved one lasts.

Spiritual counseling was carried out for the patients’ families, including during the period of pathological mourning. In this regard, the priest performed the post-mortem religious ceremony and responded to the families’ requests for prayer and reconciliation with the absence of the loved one. The spiritual confession at the end of life, as well as during the period of pathological mourning, was part of the holistic approach to the oncological patient and had a strong impact on the doctor-patient relationship and his family.

The consequences of the spiritual advisor’s intervention consisted in: 

• the patient’s reconciliation with himself and death
• the patient’s relationship with the family
• the doctor-patient relationship and with his family.

Thus, the medical team and the families were satisfied that their loved ones died at peace with themselves and God, being by their side and respecting their wishes, with the assurance of a dignified end, and through these, the pain of the families during the period of post-mortem mourning was alleviated.

Discussion

According to the World Health Organization (WHO), palliative care improves the quality of life of patients diagnosed with a progressive and incurable chronic disease, by improving the symptoms of the patient and providing psychoemotional and spiritual support⁽¹⁾.

The holistic palliative approach is a complex approach that concerns the patient with all his problems, namely physical suffering, mental suffering, spiritual issues, the relationship with the family, as well as his social integration and, consequently, the holistic therapy involves the treatment of all physical, psychosocial and spiritual problems^(2-5). 

The multidisciplinary team that cares for the oncological patient at the end of life includes the medical team (doctors, nurses, medical assistants), as well as clinical psychologists, the priest and social workers who participate in the decision-making process and the therapeutic management through information about the patient’s living environment, the past and his beliefs.

Due to the complexity of situations at the end of life, conflicts may arise between the different parts of the multidisciplinary team or the family, in which case a body with a mediation role will be resorted to, even the legal intervention of a court of justice being possible^(6-9).

The European Society of Medical Oncology (ESMO) currently defines supportive therapy as “interventions aimed at optimizing the comfort, function and social support of the patient and his family in all stages of the disease”^(10-12).

Optimizing comfort in the last months of life involves ensuring the quality of life, which is “the subjective satisfaction felt or expressed by an individual”⁽¹²⁾.

The quality of life, or well-being, aims at two main aspects:

• the physical well-being obtained by improving the symptoms associated with the disease;
• the psychoemotional state of well-being that expresses the patient’s satisfaction with his level of functionality.

In the face of a life-threatening disease, the patient’s experiences are at a maximum intensity and fluctuation, but in general they are embodied in three major experiences: helplessness, fear and anger. Ensuring the quality of life involves helping the patient to externalize or control these experiences.

By learning how to control these experiences, the patient’s degree of compliance with treatment will increase, with the improvement of his suffering and of the quality of life. Through the satisfaction of a good quality of life and reconciliation with himself and the disease, the patient will want to improve his relationship with his family, which will be his support at the end of his life^(2-8).

The holistic approach to patients’ therapy is extremely complex and includes cultural values, family, friends, confessional groups, religious beliefs, spiritual guidance, as well as social factors that influence all these experiences.

Approaching psychoemotional problems is the field of applicability of psychospiritual counseling, transpersonal psychotherapy and transpersonal art^(2-5).

Psychospiritual counseling as an approach to palliative therapy offers support to the oncological patient, by combating the fear of death, becoming aware of one’s own destiny and accepting forgiveness and unconditional love in the terminal phases of the disease, being a key element in the holistic approach and in the therapeutic decision at the end of life.

Transpersonal psychotherapy is a field of spiritual psychology where the sense of self is beyond (trans) the patient, being a development above his individual levels of perception.

Transpersonal art is the way to discover who you really are, being a therapy that guides you towards the discovery of inner resources and to the discovery of the meaning of living life beautifully, using therapy through art or music, as suffering can be removed by creating an opposite state and not fighting against suffering.

Psychological counseling is important in the management of all phases of cancer, from the period of diagnosis communication, during the treatment period and after treatment, until the end of life. Psychological counseling offers patients the opportunity to talk about their problems and concerns, to solve relationship problems with family and friends, but also to manage their psychoemotional disorders^(2,3,7).

In the terminal phase of the oncological disease, the conditions of the patient and his family are of maximum intensity, as they face the end of life. In addition, there are complications given by the oncological disease which can create feelings of repulsion from the family, one of the most frightening endings being the one in which uncontrollable hemorrhagic phenomena appear. Cancer affects the physical body, and physical health directly influences mental and emotional health^(12-16).

The psychoemotional experiences in the terminal phase of the oncological disease (sadness and depression, anxiety, fear, stress) require an individual approach to be solved, and for their good management, the help of the psycho-oncologist is required. Psycho-oncology is a branch of psychology specialized in the psychological, behavioral and social problems associated with cancer, which supports the cancer patients until the end of life, improving their quality of life by treating mental imbalances and managing personal and family problems. In this regard, for a correct and complex approach to psychological problems in the framework of holistic therapy, four psychologists of the Institute for the Study and Treatment of Trauma at the initiative of the director of the “Sfântul Nectarie” Palliative Care Center, Bucharest, in collaboration with the “Joy of Help” Foundation, developed the first psychological counseling curriculum in palliative care in Romania to support patients with terminal illnesses^(3,7).

Holistic therapy in the terminal phase of oncological disease requires a close communication and collaboration of the entire multidisciplinary team, namely the medical team, psychotherapist and spiritual advisor in decision-making and therapeutic management.

Thus, the medical team solves the physical aspects related to the disease, and the psychotherapist and spiritual counselor ensure the control of psychoemotional and spiritual experiences, with an impact on therapeutic compliance and the patient’s relationship with the family, ensuring the patient’s physical comfort and satisfaction with his level of existence.

As such, only the connection and relationship of the three intervention components in holistic therapy are essential to ensure the quality of life and an end in dignity.

From the personal experience, on the group of patients treated holistically in the palliation center, the results demonstrated that the doctor alone cannot solve the serious problems that exist for the patient in the terminal phase, but only through the intervention of the doctor together with the clinical psychologist and the spiritual advisor, the ethical principles underlying palliative care were respected and the patient’s quality of life was ensured.

Through this study, the authors of the article draw attention to the need to standardize holistic therapy in the care of oncological patients in the terminal phase.

Also, the authors of this article want to draw attention to the mandatory existence of a multidisciplinary team involved in the care of the patient in the terminal phase, which requires the existence of a medical team with competence in palliative care (doctors, nurses, medical support), the clinical psychologist and spiritual advisor.

Currently, only in palliative care centers, the multidisciplinary team involved in the care of the oncological patient at the end of life, which consists of a doctor, nurse, psychotherapist, priest and social worker, provides the necessary resources for a proper therapeutic management.

Thus, the correct and complex therapy of the oncological patient in the terminal phase is ensured only in the palliation centers where the decision and the therapeutic management require the intervention of the medical team with competence in palliative care, together with the clinical psychologist and the spiritual advisor.

Conclusions

The intervention of the doctor and the medical team solved the physical problems of the disease and ensured compliance with the ethical principles that are the basis of the palliative care of the oncological patient:

• patient’s autonomy through complete and correct information
• beneficence, through which the patient expresses his desire regarding the beneficial therapy and which does not affect his quality of life.

The intervention of the clinical psychologist had a major impact on the compliance to the treatment and on the quality of life of the patient in the terminal phase, who died in dignity, supported by the family and the loved ones, through:

• control of pain and the degree of compliance with treatment
• control of psychoemotional experiences, with the elimination of the risk of developing severe psychiatric pathology
• restoration of self-esteem and the feeling of usefulness
• restoration of the sense of belonging while avoiding isolation and helplessness
• the desire to communicate and relate with the family.

The intervention of the spiritual counselor was a support for ensuring a dignified end for the patient, by reconciling the patient with himself and with death, and by the relationship with the family, as well as support for relieving the pain of the families during the period of post-mortem mourning.

Holistic therapy works on the principle of the doctor – psychotherapist – spiritual advisor relationship and ensures the compliance with ethical principles in palliative care, the patient’s quality of life at the end of life, and a dignified end with their loved ones. Holistic therapy is the therapeutic standard in the care of oncological patients at the end of life.

 

Conflict of interest: none declared

Financial support: none declared

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