Abstract
Although mind and body are inextricably interwoven, psychological factors have received insufficient attention within medicine. The biomedical model though necessary is not sufficient. In medicine and particularly in palliative care, a holistic biopsychosocial approach is required. A number of examples from clinical practice in a hospice setting are presented.
I esteem it . . . to be clearly the office of a physician not only to restore health, but also to mitigate the pain and torments of diseases; and not only when such mitigation of pain, as of a dangerous symptom, helps and conduces to recovery; but also when, all hopes of recovery being gone, it serves only to make a fair and easy passage from life.
According to an authoritative US Research Council Committee, “Health and disease are determined by dynamic interactions among biological, psychological, behavioral and social factors.” 1 This biopsychosocial approach has much to recommend it. It should be noted, however, that psychological and social factors have been largely ignored for many years within the practice of medicine. One reason for this has been the baneful influence of Descartes, arguably the leading philosopher during the 17th century. He insisted that body and mind were entirely separate entities.
There can be no doubt that Descartes exerted a powerful influence on medicinal as well as philosophical thought. In the words of a medical historian and biologist, Martin,
From Descartes’ time onwards, a belief in the mind . . . as an intangible non-physical entity distinct from the physical body, became the preeminent view of human reality in Western thought.
2
Despite compelling evidence that mind and body are inextricably interwoven, Cartesian dualism persists. A common example is the question doctors ask when considering a patient’s symptoms: “Is this organic or psychological?” A more useful clinical approach is to consider which biological, psychological, and social factors contribute to the patient’s illness and to assess the relative importance of each factor.
That approach is often not followed and sometimes not possible. Currently in the United Kingdom, increasing pressures on general practitioners have led to consultations being restricted to 10 minutes and patients, in many cases, being asked to bring only one problem at a time. Although financial and time constraints are challenging, they are not an insuperable problem and can be addressed.
There is also the so-called law of unintended consequences. Great advances in medical knowledge in recent years, while clearly welcome, have led to increasing specialization gradually replacing the general physician. Such specialization is necessary but not sufficient. There is evidence that psychosocial factors can influence organic disease including the duration of survival in some cancer patients.3,4,5
However, the principal advantage of the holistic or biopsychosocial medical model is that adequate care requires treatment not only of the disease but also of the patient who suffers from the disease. Palliative care provides such treatment. It has been defined as “a personalized form of health care. It extends the health care professional’s mandate beyond the biomedical model to the wider horizon necessary if one is to attend to suffering as well as the biology of disease.” 5
Palliative care is not confined to the patient. It includes attention to the emotional needs of the primary care givers during the patient’s illness and subsequently to bereavement. 6
We present 5 clinical case reports that illustrate 3 dimensions of palliative care, namely, (a) effective medical treatment combined with psychological support, (b) psychological therapy—in practice, cognitive behavior therapy (CBT)—for patients suffering from cancer-related emotional distress, and (c) CBT for patients’ caregivers.
Clinical Case Report 1
The patient was a 30-year-old female with a caring husband and 8-month-old baby daughter. Her diagnosis was pharyngeal infiltrating malignancy, with HIV disease on successful treatment as comorbidity. Medications were administered via PEG tube.
The patient reported the following symptoms: agonizing pharyngeal and facial neuropathic pain with a feeling like her face is “on fire.” She had escalating pain despite increasing doses of morphine in addition to transdermal fentanyl, resulting in borderline opioid toxicity. Her health professional was distrusting of the patient, not realizing the characteristics of her neuropathic pain. The patient was becoming despondent, felt disbelieved, and therefore clearly depressed and “suffering in silence.”
Summary of Palliative Care Management
A palliative care physician caring for the patient showed empathy, believed the patient’s report of pain, and gave an explanation of neuropathic pain. This reestablished trust between the patient and professional. A neuropathic analgesic regime was commenced as follows: fentanyl dose was reduced and oxycodone commenced. Adjunctive analgesic therapy was utilized with sodium valproate, a sodium channel blocker, and mirtazapine to enhance brainstem pain inhibitory transmission.
The clinical outcome was that the patient felt “believed”; the use of empathy comforted the patient and enhanced patient-professional trust; neuropathic pain control dramatically improved, opioid toxicity resolved; quality of life improved and the patient expressed that treatment “brought a smile back to her face.” The family dynamics changed positively, with the patient feeling she was able to fulfil her role as a wife and mother again.
Clinical Case Report 2
This patient was a 50-year-old female with a diagnosis of carcinoma of the head of the pancreas encasing the celiac axis. The patient had a functioning biliary stent, and normal estimated glomerular filtration rate.
Symptoms reported: the patient was rocking forwards in agony, and reported wishing to die despite her daughter’s forthcoming wedding. She reported early satiety and nausea, and was experiencing opioid toxicity on orally administered morphine 30 mg 4 hourly with nocturnal clonazepam 500 µg. The right lobe of the lung was consolidated with a probable infective cause.
Summary of Palliative Care Management
The patient’s pain was identified as neuropathic pain from celiac plexus infiltration by the tumor and hence analgesia was appropriately altered as follows:
Two separate continuous subcutaneous infusions (CSCIs) were utilized.
CSCI 1: Diamorphine 30 mg, midazolam 20 mg, metoclopramide 30 mg (over 24 hours)
CSCI 2: Ketamine 100 mg in normal saline (over 24 hours)
The patient was also found to have sepsis, which was treated with amoxicillin/clavulanic acid. Subcutaneous dexamethasone 4 mg BD was given for a 5-day trial in order to reduce peritumoral edema. Oral pregabalin 75 mg evening daily was commenced.
The clinical outcome was that the patient had an excellent analgesic and clinical response and was able to witness her daughter’s wedding.
Clinical Case Report 3
The patient was a 69-year-old male with a newly diagnosed lung cancer infiltrating the chest wall and thus resulting in excruciating neuropathic pain. While standard chemotherapeutic management was being considered, he was referred to the palliative care physician with special expertise in neuropathic pain management.
On initial assessment the patient displayed the following symptoms: agony in the chest, and hence “wishing to die,” with the physical pain compounding the distress of the new devastating diagnosis of cancer. Morphine was resulting in quite considerable drowsiness, further impairing the quality of life, as patient’s renal function had been compromised by the use of nonsteroidal anti-inflammatory agents in the attempt to control the severe pain. The patient’s family felt helpless to assist the patient.
Summary of Palliative Care Management
An opioid switch was performed to oxycodone, and a steroid commenced in order to reduce peritumoral edema and thereby reduce the pain (together with gastric protection). Co-analgesic adjuvants were added (pregabalin and mirtazapine).
The clinical outcome was that the patient experienced excellent analgesic relief; he now felt “life was well worth living” and keenly looked forward to the forthcoming medical oncological management. His quality of life was much improved and his family pleased.
Clinical Case Report 4
In this case of advanced cancer, the patient was a 62-year-old married woman suffering ER−/PR−, HER2+ breast cancer with a solitary brain metastasis. She was referred to palliative care because of severe depression.
Cancer treatment consisted of mastectomy, FEC chemotherapy, anti-HER2 therapy (trastuzumab) and whole brain radiotherapy. When first referred she was seen together with her husband (at her request). She was clinically anxious and depressed. This was confirmed by her Hospital Anxiety and Depression (HAD) scale scores: Anxiety 14, Depression 18 (see Table 1). 7 Her cognitive functions were within normal limits with a Mini-Mental State score of 28 out of 30. Mirtazapine had no noticeable effect.
Hospital Anxiety and Depression Scale Scores, Clinical Case 4.
0 to 7, normal anxiety and depression; 8 to 10, borderline anxiety and depression; 11 to 21, clinical anxiety and depression.
She found it difficult to talk, answering questions in monosyllables, feeling hopeless, withdrawn, and agitated. Her husband, who was clearly supportive and concerned, reported that she would sit in a chair for hours doing nothing, not wanting (or being able) to talk or to carry out normal activities such as speaking to relatives and friends on the telephone, or writing Christmas cards. She had a daughter and a son, both in their 30s. Her daughter was pregnant and due to give birth in 6 weeks’ time.
During the first session, it proved possible to establish rapport. When asked about the thoughts underlying her depression and anxiety, she replied that she could not say. Eventually, however, with considerable difficulty, she admitted to fears about the cancer and her future. In particular, she wanted to know—but had been afraid to ask—“how long have I got.” This question was addressed in 2 ways: first, pointing out that no one could tell how long she would live, and second and most important, that it would not benefit her to concentrate on the duration of her survival but on what she could still do during the time left. She was encouraged to set some realistic goals.
The patient responded positively to this cognitive/behavioral approach. She began by agreeing to try writing Christmas cards and to phone her daughter and son. One week later, she reported that she had accomplished these tasks and felt less depressed as a result. By the third session, her husband reported considerable improvement in her mental state, and this was reflected in her HAD scores: Anxiety 9, Depression 13 (see Table 1). Another goal that she set herself was to be present at the birth of her first grandchild. CBT continued with the aim of further improvement in her depression.
Subsequent Progress
The patient remained psychologically well for 4 months. At this stage she developed double vision due to recurrence of a cerebral metastasis. She began treatment with capecitabine. Psychologically, she was devastated by the news and became depressed again. However, with 3 further sessions of CBT, she has recovered from her depression and was coping well with her terminal illness.
Clinical Case Report 5
Prolonged Grief Disorder
The patient was a 71-year-old retired engineer whose wife died of breast cancer 9 months before he entered treatment. They had a happy marriage and decided not to have children. They enjoyed each other’s company and shared several interests. Eight years previously, the husband supported his wife through a year-long depressive illness.
Her cancer, diagnosed 2 years previously, had progressed despite treatment (surgery, chemotherapy, tamoxifen). She became increasingly fatigued, weak, lost 9 kg weight, and developed painful bony vertebral metastases resulting eventually in paraplegia. With the assistance of home care nurses from a hospice, and 2 brief admissions to the hospice, the patient looked after his wife at home, until her deteriorating physical state required admission to a nursing home where she died 10 days later.
During the 9 months following his wife’s death, the patient developed classical symptoms of Prolonged Grief Disorder. He yearned for her presence, felt intense grief, could not believe she was dead, and felt numb, unable to get on with his life, which no longer had any meaning for him. He stopped seeing friends and would not answer the phone. He described himself as “empty, devoid of all feeling.”
Therapy began with attempts at guided mourning, a simple behavioral approach. This procedure failed to produce any improvement. CBT proved more successful as shown in Table 2. The agreed aims of therapy were
HAD Scores, Clinical Case 5.
Abbreviations: HAD, Hospital Anxiety and Depression score; CBT, cognitive behavior therapy.
0 to 7, normal anxiety and depression; 8 to 10, borderline anxiety and depression; 11 to 21, clinical anxiety and depression.
To relieve his intense grief.
To enable him to resume his previously normal life. He readily accepted the cognitive model as rational which was important to the patient.
Together with the therapist, the patient was able to identify and subsequently to challenge some thinking errors: “I failed my wife because I should never have let her go to the nursing home; she didn’t want to go”; “Perhaps if I had kept her at home, she would have lived longer . . . maybe even still alive.” These negative automatic thoughts plagued him, resulting in considerable guilt, self-criticism, and distress.
During the CBT sessions, the patient found that these distressing symptoms could be alleviated by challenging the underlying negative thoughts and adopting rational responses, that is,
It was impossible on medical grounds to continue nursing his wife at home; hence, admission to a nursing home was necessary.
There was no evidence to suggest she would have lived longer had she remained at home. He visited his wife every day for several hours and agreed that the medical and nursing care was, in fact, “first-rate.”
The behavioral component of CBT consisted of setting goals that were realistic and attainable. He agreed that a reasonable goal was to make and answer phone calls, but found he could not do this. The reason that emerged during therapy was that he feared he would be overwhelmed emotionally if and when relatives or friends asked about his wife’s death and his current feelings. The therapist suggested that the patient could control which topics he wished or did not wish to discuss and this would remove his fear of being overwhelmed. The patient was encouraged to make a phone call to his sister, the least feared. To his surprise, he was able to control the conversation as suggested. He then felt able to talk to other relatives and friends. As a result he lost his fear, an important step in overcoming his social isolation.
However, he still spent much of this time sitting at home, grief-stricken, doing nothing. He was thus asked to draw up a list of tasks that could provide a sense of achievement and/or pleasure, and to record what he managed to do every day in a diary (activity scheduling). A series of activities ranging from simple (eg, planting bulbs in the garden) to difficult (sorting out his wife’s clothing to take to a charity shop) tasks were undertaken by the patient, resulting in a gradual return to a more normal daily life. At the completion of CBT after 10 sessions, he was much improved. Although he continued to miss his wife and mourned her, he no longer suffered from the symptoms of Prolonged Grief Disorder, and had begun to resume his normal life. He maintained his progress when seen at follow-up 6 months later.
Discussion
These clinical case reports illustrate the practice of palliative care of hospice inpatients and outpatients in terms of medical treatment (Case Reports 1, 2, and 3), psychological therapy (Case Report 4), and bereavement counselling of a primary carer (Case Report 5).
Holistic practice of palliative medicine embraces the golden principle of maximizing quality of life by means of expert symptom management coupled with sensitive exploration, explanation, and management of patients’ psychological and spiritual concerns. 8
Palliative care should endeavor to integrate with oncological care in a timely manner in order to holistically optimize patient care. 9
At the end of life, palliative medicine enables patients to have, in the inimitable words of Keats, 10 “an easeful death.”
Attention to one domain of care alone will not sufficiently achieve the fullest potential of “patient-centered palliative care.” Attention to detail is crucial. This is exemplified in the detection and timely management of impending spinal cord compression. 11 This would enable adequate control of the spinal pain but also will preserve functional neurology, thus clearly improving the patient’s quality of life. Another example in this domain of care is in the appropriate management of pain from critical, yet untreatable limb ischemia. 12 Successful analgesic control should always take into account minimizing drug-induced adverse effect profile. If physical symptoms are not adequately managed, attempts at providing emotional support will not prove successful.
Incorporating family concerns is essential; self-worth needs to be reestablished; patient-professional trust should be maintained. Clinicians need to be aware that physical and emotional domains of care are inextricably intertwined at every stage of the patient’s illness trajectory. In all cases clinical excellence needs to be completed with empathy in caring.
Specific observations on these cases include the following: (a) Close cooperation between the palliative care physician and professionals providing psychological support is essential, whatever form of psychological management is used (eg, counselling, cognitive behavior therapy). This cannot proceed until pain and other severe physical symptoms are alleviated. (b) The psychological therapist should have knowledge of the medical diagnosis, the nature and cause of the patient’s physical symptoms—particularly the side effects of chemotherapy, which the patient may consider stopping—and the likely prognosis in order to discuss emotionally distressing end of life issues. At the same time, the palliative care physician should be aware of anxiety, depression, and other psychological symptoms. (c) Palliative care includes bereavement counselling, where required, for the person who loved and cared for the patient.
Conclusions
The clinical reports presented here suggest that palliative care can produce marked improvement medically and psychologically in terminally ill patients. In addition, prolonged grief among primary carers can be alleviated. Randomized controlled studies are required to confirm these clinical findings and to determine which type of psychological therapy is the most effective in alleviating emotional distress among the terminally ill.
Footnotes
Acknowledgements
We are grateful to all our patients who shared their physical and emotional state with us.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.