Palliative care is a medical discipline that has become increasingly important in recent years. The focus is on the treatment of disease-associated complaints. The survival time of sufferers with non-curable diseases has increased significantly in recent years due to a wide range of treatment options. The complexity of disease situations is also magnified by the extended life span with a disease.
Palliative care is a medical discipline that has become increasingly important in recent years. The focus is on the treatment of disease-associated complaints. The survival time of sufferers with non-curable diseases has increased significantly in recent years due to a wide range of treatment options. The complexity of disease situations is also magnified by the extended life span with a disease. This circumstance leads to an increasing challenge and increased demands on the treatment team in order to do comprehensive justice to the affected persons.
Palliative care is repeatedly confronted with various misconceptions, such as that this treatment only takes place immediately at the end of life, that it leads to an increase in costs, that it is only available to oncological patients, or that it can only be used in an inpatient setting on a palliative care ward. The goal of palliative care is early involvement of the treatment team so that the remaining life of persons with advanced disease, not just oncologic disease, can be favorably affected. This should be done not only after completion of the respective disease-specific treatment, but already early in the course of the disease. Therefore, it is a parallel treatment and not a sequential treatment. It has been impressively demonstrated that early inclusion of palliative care in advanced disease leads not only to an improvement in quality of life, but also to less aggressive treatment with additional prolongation of life [1]. In the current era, with non-negligible respect for financial resources, it has also been described that early co-care by a palliative care team leads to both a reduction in costs and a shortening of hospitalization time [2,3].
A case study will be used to illustrate the challenge for the medical profession and practical examples of implementation.
Case study
A 31-year-old patient was assigned to the palliative care unit as an inpatient by the treating oncologist. The patient had been known to have a metastatic testicular tumor for 6 years. Histologically, a mixed tumor with parts of a yolk sac tumor, a teratoma and a rhabdomyosarcoma could be detected. Initially, semicastration was performed. After only a few months, a recurrence with retroperitoneal and pulmonary metastases had to be diagnosed. In the following years, a wide variety of chemotherapies, radiotherapies and surgical procedures were performed. Nevertheless, new tumor growth was observed again and again. Currently, there was an emergency hospitalization due to symptomatic metastases pleural and pulmonary with dyspnea, pain, cough, hemoptysis, and anorexia-cachexia syndrome. As it progressed, it became clear that the full range of palliative care was covered and that care was needed from different members of the treatment teams.
The bio-psycho-socio-spiritual and cultural model
Considering the overall situation, an assessment according to modified bio-psycho-socio-spiritual and cultural model by Engel [4] was applied. The complaints are not only reduced to the somatic components, but must be viewed holistically. This reflects the complex disease situation in many patients today. The individual components of the bio-psycho-socio-spiritual and cultural model are broken down below (Fig. 1) .
A. Somatic (bio) component
The physical complaints are often in the foreground at the beginning. These must be recorded by an entry assessment and classified and categorized by suitable instruments. A wide variety of validated recording instruments are available for this purpose.
From the somatic side, the patient complained in particular of pain and dyspnea. These symptoms were attributed to both the tumor and known pulmonary metastases. A detailed history revealed a neuropathic pain component, which can be observed in approximately one third of oncology patients. Neuropathic pain may be present in patients with pulmonary malignancy, particularly when there is infiltration of the pleura. For this reason, the treatment of these complaints is on the one hand with a combination treatment with a fixed peroral medication with an opioid, in this situation oxycodone, and on the other hand further with a peroral administration of methadone to treat the neuropathic pain. Thus, a satisfactory pain situation was quickly observed. There was also marked tumor fatigue and anorexia-cachexia syndrome. Tumor fatigue was treated probatorily with methylphenidate. However, no significant improvement of the complaints could be observed with this. For the treatment of anorexia-cachexia syndrome, close co-management with nutrition counseling was initiated. Physical therapy was called in for mobilization and respiratory therapy. From the somatic side, the complaints could thus be satisfactorily adjusted and a discharge home could be organized. Due to disease progression, re-entry occurred after a few weeks.
In the course of a subsequent hospitalization, the symptoms became increasingly difficult to control. We recommended continuous subcutaneous infusion for the patient to administer analgesics for better pain control. Although this subcutaneous pump was demonstrated and explained to the patient, he vehemently refused installation, so peroral medication was forwarded. In the further course, the information from the patient was very fluctuating, so that compromises had to be made again and again. The switch from subcutaneous to peroral medication was made several times in the further course with the patient remaining dissatisfied. In case of progressive deterioration, parenteral administration was finally left until exitus lethalis, with objectively good symptom control.
B. Mental (psycho) component
A life-threatening illness leads to psychological stress for most of those affected. This part of the disease can be favorably influenced by psychological and psychiatric support.
From the psychological side, the patient showed massive stress. With the help of the psychologist, we tried to help the patient cope with the disease. On the one hand, however, this showed a more difficult acceptance of illness, and on the other hand, a rejection of our offer. It became clear that due to the impending end of life, which he was well aware of, the patient had to confront a situation which he did not want to acknowledge. Nevertheless, he explicitly did not want further psychological or psychiatric treatment. A wide variety of treatment options were discussed during interdisciplinary meetings in the palliative care unit; unfortunately, all suggestions were repeatedly rejected by the patient. The assessment of the capacity to judge always had to be answered with a “yes”, so that we had to accept this decision of the patient by necessity.
C. Social (socio) component
The patient lived with his family and did not want social support. The social worker offered input several times to clarify financial and insurance issues. During the last hospitalization before death, the relatives were offered several roundtable discussions with the entire family and also with an interpreter. However, these were always rejected. The family indicated to us that they did not want to be confronted with the passing. Objectively, the family seemed to be slowly coming to terms with the death of their son and brother and becoming aware of the inevitable and unwanted end. Both the patient and the relatives have clearly gone through the individual steps of the dying phases according to Kübler-Ross. When not specifically sequenced, the phases of not wanting to know, anger, bargaining, depression, and consent can be observed in both the dying and the relatives. In the patient, this manifested itself in particular through outbursts of anger and aggression towards the treatment team. This circumstance was very challenging for the entire treatment team. In an advanced phase of the disease, however, increasing depression became unmistakable in the patient. In the case of relatives, it was more often phases of negotiation in the sense of application and expectation of different therapies to lead to the patient’s cure. In the mother, depression and an acceptance of illness prevailed.
D. Spiritual component
Assessing and addressing spiritual and religious needs can lead to improved quality of life for patients and families. However, the spiritual aspects are often forgotten and are only captured and perceived in a palliative care assessment. However, it is known that a large proportion of patients suffer in this area [5].
The patient was from Iraq and professed the Muslim faith. He was a practicing believer, but lived his faith only within his family. During the inpatient stay, both the patient and his relatives were offered spiritual support by an Islamic chaplain. This offer was always declined, so we could not offer any help to the patient and family in this area.
E. Cultural component
There is an additional component that exacerbates suffering when affected individuals come from a foreign culture [6]. This constellation became very clear in the patient in the present case.
The family, originating from Iraq, had been living in Switzerland for several years, but did not speak German or any other national language. The family members had only a basic knowledge of the German language. Nevertheless, they were not willing to allow an interpreter to optimize communication. The patient was cared for by his family, especially by his brothers. This rejection of external support thus led to misunderstanding and also to a deterioration of medical care [7]. During the course of the stay, increasing rejection and “interference” from strangers became apparent, further complicating treatment. On the other hand, it was obvious that the patient’s mother in particular had great difficulty accepting her youngest son’s illness. She did not speak German, so verbal communication was never possible. The mother tended to distance herself as soon as she saw members of our treatment team. All suggestions to optimize the understanding were rejected during the entire stay.
Practical procedure for the palliative care patient
Since palliative care patients often present with complex situations, the application of the so-called SENS model according to Eychmüller has proven successful in practice [8]. Here, the acronym SENS stands for the 4 pillars of treatment in palliative care. These are symptom management, decision making and expectations, network organization, and environment support. This assessment is designed to address the complexity of a palliative care patient and to comprehensively assess symptoms to enable appropriate treatment. This model can be applied in most situations in the palliative setting (Fig. 2).
S = Symptom management
Symptom management involves recording the complaints that bother the patient. These must be recorded, documented and addressed in a targeted manner. Goal setting is an essential component of this palliative care assessment. On the one hand, the individual complaints of the patient must be identified, on the other hand, a weighting must also be carried out. The main focus is often on pain management because pain is very often the first thing patients mention. The use of validated assessment tools such as the ESAS (Edmonton Symptom Assessment Scale) questionnaire reveals a wide variety of symptoms that patients often do not report on their own. After that, the concrete target setting takes place. This will be critical to a successful and satisfactory outcome. According to Calman, the difference (gap) between expectations and reality is proportional to the current quality of life, i.e., the smaller this difference is, the better the quality of life, which can only be assessed subjectively (Fig. 3) [9]. Suffering is a subjective perception of discomfort, but it is not reduced to physical discomfort alone. Therefore, complaints or symptoms from the entire bio-psycho-socio-spiritual and cultural realm may be present.
The complaints in the case study mentioned at the beginning then also extended not only to the somatic complaints, but also to the other components of the bio-psycho-socio-spiritual and cultural spheres.
E = Decision making and expectations
In today’s medicine, very many treatments and therapies are feasible. In individual cases, however, the question must always be asked as to which therapy is feasible and which makes sense in the current phase of the disease. This fundamentally subjective assessment must be explored and formulated with the patient. For this, those affected need sufficient information and help from the medical side. In light of the medical history, experiences and one’s values, needs and goals can be established. In addition to the medical determination of the procedure, end-of-life planning is also needed. These difficult issues for those affected are often repressed and postponed. Nevertheless, difficult questions such as wishes about the place of death or religious rituals or the funeral should be discussed together with the relatives. This allows for individually desired planning of the last phase of life. Looking ahead, drawing up an advance directive can be very helpful at an early stage of the disease.
N = Network organization
Care for the sick should be provided at the place of choice. After this wish has been discussed, a concrete implementation of the care there must take place. For this to be possible, a wide variety of contingencies and emergency situations must be discussed. On the one hand, these are aids to make everyday life easier, and on the other hand, they also provide administrative support, for example in insurance matters. Furthermore, the existing network of professionals must be illuminated. In addition to the family doctor, who assumes the key position in the event of a discharge to home, the possibility of involving Spitex, mobile palliative service or even relatives and friends must be discussed and addressed in detail. The development of a contingency plan has proven to be very effective.
S = Support for relatives
The involvement of family members is extremely important. This is already reflected in the palliative care definition of the World Health Organization (WHO), where relatives are explicitly considered as part of the care. For this reason, they must be given important attention so that they are not forgotten in the acute crisis situation with a sick relative. Asking family members how they are doing is an important question during the admission assessment. This is because they often get pushed into the background and their needs and hardships can therefore often be lost.
This situation was demonstrated very impressively in our case study. The patient was of course the center of attention and any treatment for him was desired. In particular, the male members of the family have come to the fore. It became apparent, as mentioned above, that the patient’s mother in particular was very much at odds with the situation. By asking directly about well-being, the concerns of the entire family can be illuminated.
Conclusion
In this patient, the full range of a modern palliative care problem and care could be recorded. At the beginning of the treatment, somatic treatment was in the foreground, but in the further course, needs of care from the entire bio-psycho-socio-spiritual and cultural area could be observed.
The complexity of palliative care has undoubtedly increased in recent years. The challenges for the treatment team have certainly grown due to diversity and a wide variety of ailments from the bio-psycho-socio-spiritual and cultural realms. A good and goal-oriented treatment should be approached with an interprofessional team in order to do justice to the sick and their different complaints. With the help of the SENS model, adequate care can be initiated and thus a targeted improvement in the quality of life can be achieved, which is then also the main goal of palliative care.
Take-Home Messages
- A palliative care team should be consulted at an early stage.
- Palliative care is provided primarily at home.
- It is a multi-professional treatment.
- Disease assessment is based on bio-psycho-socio-spiritual and cultural aspects.
- The application of the SENS model covers the complete range of complaints.
Literature:
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- Zaborowski N, Scheu A, Glowacki N, et al: Early Palliative Care Consults Reduce Patients’ Length of Stay and Overall Hospital Costs. Am J Hosp Palliat Care 2022 Jan 21; doi: 10.1177/10499091211067811.
- Davis MP, Van Enkevort EA, Elder A, et al: The Influence of Palliative Care in Hospital Length of Stay and the Timing of Consultation. Am J Hosp Palliat Care 2022 Jan 24; doi: 10.1177/10499091211073328.
- Engel GL: The need for a new medical model: a challenge for biomedicine. Science 1977; 196(4286): 129-136.
- Michael NG, Bobevski I, Georgousopoulou E, et al: Unmet spiritual needs in palliative care: psychometrics of a screening checklist. BMJ Support Palliat Care 2020 Dec 1; doi: 10.1136/bmjspcare-2020-002636. epub ahead of print.
- Monette EM: Cultural Considerations in Palliative Care Provision: A Scoping Review of Canadian Literature. Palliat Med Rep 2021 May 20; 2(1): 146-156; doi: 10.1089/pmr.2020.0124.
- Nalayeh H: Addressing the cultural, spiritual and religious perspectives of palliative care. Ann Palliat Med 2018; 7(Suppl 1): AB016; doi: 10.21037/apm.2018.s016.
- Eychmuller S: SENS is making sense – on the way to an innovative approach to structure Palliative Care problems. Ther Umsch 2012; 69(2): 87-90.
- Calman KC: Quality of life in cancer patients – a hypothesis. J Med Ethics 1984; 10(3): 124-127.
InFo NEUROLOGIE & PSYCHIATRIE 2023; 21(1): 6–9
