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PERSPECTIVE
Year : 2022 | Volume
: 59
| Issue : 1 | Page : 128-131
Psycho-socio-spiritual care in multiple myeloma: Are we lagging behind?
Vasundhara Saha, Kanhu Charan Mallik
Department of Physical Medicine and Rehabilitation, All India Institute of Medical Sciences, Ansari Nagar East, New Delhi, India
Correspondence Address:
Vasundhara Saha
Department of Physical Medicine and Rehabilitation, All India Institute of Medical Sciences, Ansari Nagar East, New Delhi
India
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/ijc.IJC_1208_20
How to cite this article:In the new age, the bio-psycho-socio-spiritual model has been reviewed and proposed in multiple areas, most commonly in cancer. Yet, it seems it has not been fully established in majority of the medical care facilities.[1],[2],[3] The literature is still lacking about provisions and lacunae of health centers in India.
Multiple myeloma (MM) is considered to be one of the debilitating cancers affecting the global quality of life (QOL) in majority of patients. The age-standardized rate for its incidence in India is 0.7/1,00,000 or 6,800 cases per year, whereas, the 5-year prevalence is 11,600 or 1.4/1,00,000. The annual percentage change in incidence of MM over the past years reflect improved survival with new treatment modalities.[4] With improved survival, their rehabilitative and functioning needs also increase subsequently. Various studies on MM patients have reflected low QOL irrespective of the treatment, disease, or response status.[5] Studies have identified various unmet needs in patients with MM and other hematological malignancies as well as solid tumors. Most of the needs are inclusive of the need for information regarding diagnosis and management as well as their future status, the need for re-acquisition of their roles in society and family, relational needs, need for support through interaction with like-situation people, and practical concerns such as accessibility, transportation, and financial issues.[6],[7] Psychological issues such as anxiety and depression, fear of future and the unknown, and other emotional needs are also a source of concern for them. These affect their QOL immensely.[7],[8] Spiritual concerns have not been evident in most of the studies. It could be because the patients are not usually aware of their spiritual issues. Even if they are aware, they do not know whether and how they are supposed to express the same. Evaluation of patients with MM in some centers of India have reflected the unmet needs to be mainly associated with reduction of stress, addressing fear of the future and returning of cancer, handling family and work situations, need for emotional and social support, need for information, and going on with life.[9] Most of the unmet needs happen to be in relapsed/refractory disease. Although activity limitations, sexual functioning, emotional status, supportive needs, coping, and spirituality adversely affect the QOL of MM patients, the existing QOL questionnaires do not cover all the aspects important to be addressed in such patients.[10] A cross-sectional study on MM patients depicted that psychological morbidity with unmet emotional and financial needs was found to be the most significant predictor of worse QOL.[11] Similar findings have also been reported by other studies on MM and other cancers.[12] Unmet needs have been mainly found in the area of psychosocial care and comprehensive cancer care.[13] A review on health-related QOL of MM patients suggested that although the QOL improved in patients after induction therapy, the improvement was within the minimal important difference or only reached moderate levels.[14] This change in QOL stabilizes during the maintenance phase with no further improvement. This is suggestive of the fact that only biological or medical treatment may not solve the purpose of care in totality. The other aspects of care, that is, psychosocial and spiritual domains need to be catered to in a timely and effective manner.
We, as rehabilitation physicians, provide consultation to many MM patients, owing to the skeletal and muscular involvement due to myeloma. Majorly, the rehabilitation protocol is inclusive of spinal orthotics and other orthotic devices, exercise therapy according to the severity of the involvement, and activities of daily living training and care.[15] Still, many of the patients do not undergo the assessment and interventions suggested by the rehabilitation team. The reasons for the same have not been assessed objectively but could be due to a lack of information and communication regarding rehabilitation among the medical professionals involved in cancer care. But, as a rehabilitation expert, we found that we have also been focusing mainly on the physical aspects of care. The psychosocial and spiritual domains have been still undermined so far. And, as clinicians, it becomes vital for us to provide such patients with care in totality that they rightfully deserve.
The psychosocial domain is a vast realm and so is spirituality. Both are an integral part of building the QOL of people, while complementing each other. Spiritual needs are common among patients, and spiritual beliefs have been found to be associated with both physical and mental health outcomes. Many patients do want their spiritual needs to be addressed. But not many clinicians or institutions are actively involved in addressing such issues.[16],[17] Moreover, spirituality and religiousness have been found to be associated with improved outcomes and QOL in MM and hematological malignancies.[18],[19] Also, lack of spiritual support has been found to be associated with poor QOL and increased treatment costs at the end-of-life phase. Despite its known importance, it has been found to be the most neglected domain of palliative care.[20] This has been found to be true for various chronic and advanced illnesses.[21],[22] Most of the clinicians tend to keep alleviation of physical distress in priority and overlook the psychosocial and spiritual distress.[23],[24] Moreover, apart from the patients' distress, it is extremely important to address the distress of caretakers and other family members during diagnosis, treatment, maintenance, end-of-life, and bereavement phases.[25],[26] Certain barriers exist in the implementation of spiritual care to cancer patients. The most important barrier seems to be lack of understanding and confidence in the domain of spirituality apart from lack of time. As these patients can have varied emotions and both spiritual distress and spiritual trust can coexist, learning to evaluate spiritual distress is the basic skill recommended for doctors and nurses to formulate an acceptable and appropriate plan for spiritual care.[27] Moreover, the lacunae of assessment tools and guidelines impose a significant limitation in imparting such care, hence limiting the patients' satisfaction level and QOL. Thus, more research studies require to be promoted to enhance its understanding and implementation in Indian health care settings.[27]
A study on the assessment of QOL and needs of advanced cancer patients at our center reflected that 80% of patients had a need for information regarding the treatment and its side effects. As many patients are unable to express their needs, use of specialized tools becomes necessary.[28] Although there is no objective data to support, a lack of open communication with the patients and their family members could be one of the reasons for their inability to voice their needs. Many questionnaires for evaluation of spiritual needs have certain shortcomings too.[29] The spiritual concerns, such as guilt, blame, and fear, as well as questions, such as life's purpose and meaning, the role of karma, the aspect of religion, and their role as an individual, play a significant role in affecting the QOL of patients and their caregivers.[30] Various approaches available for psychosocial issues include psychotherapeutic, behavioral, and psychopharmacologic techniques such as cognitive behavioral therapy, family and group therapy, biofeedback, relaxation therapy, hypnosis, guided imagery, mindfulness, and meditation.[31] Likewise, spiritual needs have to be addressed in diverse ways.[21] Although we could not find any studies on improvement in QOL with spiritual care in Indian settings, addressing such concerns timely at the first point of contact, and at every stage, may have the propensity of immense transformation. There may be a requirement for such dealings by an expert, but a basic training of the clinician can be of paramount importance in changing the lives of patients and their caregivers. Many a times, patients just need to vent out. Overall, listening to the patient, allowing them to express openly, and giving them enough time are most important.
As stated above, there are many studies that have assessed the psychosocial and spiritual needs of patients with cancer and MM and also have stressed the importance of intervening in alleviating such needs. But we could not find any study assessing the outcomes after applying the bio-psycho-socio-spiritual care model. It seems that we are aware of most of the unmet needs as evident through research in India and worldwide, but the concern is whether we are actively giving our full potential to resolve “all” of these unmet needs. Still, much research is required to understand how to implement the resolution of such needs, the persistence of which is making us lag behind.
Practical Perspective
The initial step toward accomplishing holistic care is to understand its domains well with clarity of approach by every clinician.The second is assessment of all the needs of patients as well as caregivers, be it physical, psychosocial, or spiritual. The assessment can be either objective with a proper format or semistructured.Proper communication at all levels is of utmost importance, with attribution of adequate time and clarity. It should be inclusive of education of the patient and the caregivers, with most of their queries getting answered. There is a need to propagate open communication effectively, with the elements of empathy, use of simple understandable language, and refraining from false hopes. Most of the time, the distress of the patient lessens when they are able to understand each aspect of their disease and treatment.Proper and timely referral is important for addressing the psychological concerns through various modalities such as counseling, cognitive behavioral therapy, hypnosis, and medication when required.Timely referral of all patients to the rehabilitation team for ongoing and presumed decline in physical functioning along with training for activities of daily living on an individual basis is needed. As the course of the disease is variable, the rehabilitation protocol changes accordingly at frequent intervals.Medical professionals need to be trained in the concept of spirituality, ways of assessing and interpreting spiritual needs, and ways of addressing such needs on an individual basis through yoga, meditation, mindfulness techniques, understanding and inculcating the teachings of various scriptures, and much more while maintaining the values, dignity, and cultural beliefs of the patient and the caregivers. The provision of an expert may also be needed.[21],[27]Detailed information about the support groups for MM should be provided, and the patients' experiences of the same can be discussed during the follow-ups.Financial issues need to be assessed with the provision of adequate support as is possible.Support to the caregivers and other family members is needed at every stage of the disease, including the bereavement phase.Use of social media platforms for propagating knowledge; addressing concerns; maintaining emotional, social, and spiritual health; and providing support at all levels is needed.There needs to be a collaboration among various clinical departments involved in cancer care such as medical, surgical and radiation oncology, physical medicine and rehabilitation, palliative medicine, and psychiatry. Effective communication among the specialties is a prerequisite for achieving any goal toward holistic care.Promoting research in all the domains of holistic care is needed.Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References
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