|Ahead of print
Psychosocial counseling of patients planned for hematopoietic stem-cell transplantation for malignant conditions—practical challenges and solutions from India
Vishnu Gopal1, Smita Kayal1, Biswajit Dubashi1, Vikas Menon2, Surendran Veeriah3, C Sivakumar1, R Jayalakshmi1, Bhanu Prakash Bandlamudi1, Arnab Bhattacharjee1, Sindhu Dahagama1, D Kalpana1, Divya Annadurai1, Prasanth Ganesan1
1 Department of Medical Oncology, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry, India
2 Department of Psychiatry, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry, India
3 Department of Psychooncology, Cancer Institute (WIA), Chennai, Tamil Nadu, India
|Date of Submission||31-Jan-2020|
|Date of Decision||02-Feb-2020|
|Date of Acceptance||19-May-2020|
|Date of Web Publication||27-Jan-2021|
Department of Medical Oncology, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry
Source of Support: None, Conflict of Interest: None
Hematopoietic stem-cell transplantation (HSCT) is a life-saving procedure often performed to cure relapsed and difficult-to-treat malignancies. Only a handful of centers in India were initially involved in the delivery of these services. However, in the last decade, more than 100 centers in the private and public domain have started offering transplant services in the country. Moreover, there are funding options, which has opened up this expensive treatment options for economically backward patients. Costs apart, there are multiple social, familial, and emotional challenges faced by these patients. A multidisciplinary support team involving social workers, psychologists, and transplant nurses, besides the treating hematologist/oncologist, is required for the optimum care of these patients. These challenges, in the Indian context, are often unique. Unfortunately, there is limited information and resource available to guide counseling of patients planned for HSCT in India. We conducted a workshop at our center where a panel of experts with experience in dealing with patients undergoing HSCT discussed issues faced by them. These discussions constitute a valuable resource for counseling patients planned for HSCT. They were transcribed by a postgraduate doctor and are summarised here in a case-based format.
Keywords: Bone marrow transplantation, counseling, psychosocial issues
|How to cite this URL:|
Gopal V, Kayal S, Dubashi B, Menon V, Veeriah S, Sivakumar C, Jayalakshmi R, Bandlamudi BP, Bhattacharjee A, Dahagama S, Kalpana D, Annadurai D, Ganesan P. Psychosocial counseling of patients planned for hematopoietic stem-cell transplantation for malignant conditions—practical challenges and solutions from India. Indian J Cancer [Epub ahead of print] [cited 2021 Feb 25]. Available from: https://www.indianjcancer.com/preprintarticle.asp?id=308056
| » Introduction|| |
The word “cancer” evokes enormous fear, anxiety, and even depression in many patients. Understanding the journey and getting the right support is the best thing one can do to improve the quality of life after the diagnosis of cancer. A patient's financial, social, and psychological situation invariably changes after being diagnosed with cancer and a support system is very important to guide them through this process., Some forms of treatment like hematopoietic stem-cell transplantation (HSCT) for hematological cancers impose an additional burden on patients. These patients face many challenges while navigating through this process which is expensive, time-consuming, and filled with uncertainties about the benefit in an individual patient. The economic and social problems faced by Indian patients are different from Western counterparts.
Even within the country, the issues to be addressed in a public hospital (catering to poor patients who are completely dependent on hospital and governmental support) differs from those faced by a patient undergoing the same treatment in a corporate hospital (using his own funds/insurance support). Some psychological issues may be culture-specific and may be similar between centers. There is limited literature available on the psychological issues affecting patients undergoing HSCT in India and how to address them.
As part of the 10th anniversary of the department of Medical Oncology at Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), we conducted a “Continuing Medical Education (CME) on blood and marrow transplant” on 31st August 2019. The focus of the CME was to address the practical issues faced while managing HSCT patients in India. We had “breakout sessions” with small groups of experts from different parts of the country. One such session was focused on issues related to counseling of patients planned for HSCT. We presented scenarios faced by actual patients who had been managed at our center over the last 5 years to a panel consisting of two experienced social workers, a psychiatrist and a psycho-oncologist with experience in dealing with patients undergoing HSCT and a medical oncologist involved in HSCT. The patients scenarios presented are modeled based on patients and situations encountered during practice but do not directly refer to actual patients.
Scenarios and suggestions
A 30-year-old woman diagnosed with relapsed acute myeloid leukemia was evaluated at the transplant clinic. Despite repeated counseling, she was unwilling to consent for HSCT. It was explained that allogeneic transplant was the only treatment which could potentially cure her condition. Her concerns were—her “fear” of HSCT and the toxicities associated. How can this patient be counseled?
It is important to collect pertinent details (age, sociodemographic situation, gender, medical details, likely outcomes, and likely toxicities) from each patient to understand his/her socioeconomic and cultural status and then her “fears” are discussed. After identifying specific concerns, these need to be individually addressed. Some of the questions and the possible responses are as follows:
What are her concerns? Is she worried about the toxicity of treatment or troubled by financial difficulties or social concerns?
- Some of the actual concerns voiced by patients are given below. (the predominant psychosocial domain relating to each question is added in parentheses): “who will take care of me?”(psychological), “who will look after my children and family while I am undergoing the procedure?” (social), “How will we pay for this treatment?” (financial burden), or “how bad will the mouth ulcers be—will I be able to eat anything at all?” (treatment side effects) and “will I die during the process?” (toxicity of treatment and consequences)
- What is the side effect of treatment which they fear the most?
- Is it some specific issue that has been misunderstood by the patient? This can be clarified
- The counselor can present the toxicity in the context of risk versus benefit scenario (comparing with the risk of disease relapse).
The patient also has to face the reality of the relapsed disease. Has she contemplated how she would deal with that situation? This can be probed with specific questions to understand whether her decision against a transplant was with full knowledge of the consequences.
Suggestions from the panel:
- Give the client breathing time with progressive relaxation techniques., Then they may be in a better frame of mind to listen and understand the process.
- Breaking the counseling into multiple sessions to educate about the HSCT procedure with cost-benefit-risk analysis.
- The patient can be made to interact with those who successfully completed the transplant to decrease her fears and increase her awareness.
- Psycho-education about HSCT can be incorporated at the time of diagnosis itself by the treating physician or by a trained professional, as a priming session to avoid unnecessary and random internet searches on the topic which could misguide them and increase their fears. Suitable material can be provided to them which include basic information about the procedure as well as links to reliable web pages and online videos.
- Reassurance must be provided to the patient and family with support and guidance by the treating team during the pre-transplant phase.
Whenever a patient is unwilling for HSCT, attempts must be undertaken to understand the reasons for refusal and these can be explained to the patient. However, a patient may genuinely be unwilling and patient autonomy is paramount, and his/her wishes should be respected., In addition to counseling, some of the financial and social issues may require additional support from the healthcare team as discussed in situations 2 and 3.
A 17-year-old boy with relapsed acute lymphoblastic leukemia (ALL) has come to the transplant clinic with his family. The family understands the need for transplant but is unwilling because of inadequate financial and social support. How can we help them as a team?
There are government schemes for financial support available in certain states and from the central government which may be applicable to the patient. These can be explained to them. Even if they don't qualify for the government schemes, there are nongovernmental organizations (NGOs) that can help individual patients. The power of social media is often used for getting this kind of support. The family must understand what this means and what it entails. Getting an NGO support might involve displaying pictures of the patient and family publicly for which they have to be prepared. The social support team can help the patient in contacting the right people and sourcing funds in this manner [[Table 1] shows the financial support options available in India for HSCT].
Suggestions from the panel
- Understand the various schemes: Social workers and transplant coordinators need to be familiar with the workings of various schemes so that they can advise patients accordingly and organize the process for the arrangement of the funds.
- Start early: Since these steps take time, preparations must start sufficiently in advance so that funding is available at the time of the start of transplantation. Again, this means that the transplant option may have to be discussed at the time of diagnosis itself, at least in some patients where it is strongly anticipated.
HSCT is an expensive procedure. The transplant team must be aware of the various support schemes available to ease the financial burden on the patient and family.
The next case highlights social barriers to the stem cell transplant process. The major challenges brought out are: finding funding for the procedure, support for childcare, and challenges in running the household when the major breadwinner is undergoing the procedure or is involved as a caregiver.
An 8-year-old girl with a diagnosis of relapsed ALL was planned for HSCT. She has secured funding through the government grant process and has a fully matched sibling donor. However, the parents have two more small children and they refuse the procedure because they want to take care of them. How can we counsel them?
Arranging funds for stay and food is part of the challenge here. However, there are other challenges as detailed in [Table 2]. Daily wage laborers from outstations are the ones who suffer the most. Trying to arrange a daily wage job for one of the parents with the help of NGOs can help to reduce the financial burden of daily living. Some centers take help from NGOs which run a “HOME AWAY FROM HOME” for children with limited social support. At this point, these supports are available only for pediatric patients in India. A similar concept is available for teenage and young adult cancer patients in the United Kingdom which is supported by the Teenage Cancer Trust.
|Table 2: The social challenges faced by transplant patients and possible solutions|
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Most allogeneic transplants would require the patients to stay in the same city for at least 3 months. The duration may extend up to 1–2 years in case of major graft versus host disease (GVHD) and related complications.
There are no easy solutions to certain problems. Any HSCT unit predominantly working with patients belonging to low socioeconomic strata, must make efforts to develop supporting infrastructure as described above. Many of these are developed by NGOs working in this space and hematologists and oncologists would do well to contact them to develop similar support systems in their area or hospital.
A unique challenge which is not an uncommon situation in our country is when a donor is unwilling for the procedure. This creates significant distress for the patient and her family when the decision is sudden and when all other arrangements for the transplant have been undertaken.
A 26-year-old man was planned for the HSCT as he had chronic myeloid leukemia, blast-crisis (CML-BC). He had two siblings of which one was not willing to donate from the beginning and the second one backed out during the workup because of fear. What can the system do to help more people donate stem cells?
This scenario, though uncommon does occur in an occasional patient. Unfortunately, people have different concepts and fears, many of them not based on scientific rationale. There are also genuine concerns about the effects on the donor's health. The only solution for this is proper counseling. It can be improved by making the patient and their family interact with survivors and donors.
Donor refusal is also seen when the donor is a married sister. In this situation, refusal happens due to concerns of the husband and in-laws of the donor.
Suggestions from the panel
- It should be made clear that donating stem cells causes only minimal discomfort to the donor.
- If required, efforts must be taken to counsel the spouse and in-laws of the donor and they must be assured and taken into confidence.
- The motivation for donating should be understood by proper upfront counseling and it should be tackled accordingly.
- Another suggestion is to maintain complete anonymity regarding donor counseling and to appoint two different physicians for counseling donors and recipients. Even in related donations, this will help to keep emotions out of the decision-making process.
Counseling is the key to tackling donor refusal. Routine provision of psychosocial support to donors is also equally important., The team must take efforts to involve members of the donor's family into confidence and explain the process to them.
When all these issues are sorted, patients sometimes get dissuaded due to misleading information from other sources.
A 47-year-old man with a diagnosis of CML-BC was counseled for allotransplant. They refused because we could not offer a 100% guarantee and he opted for alternative medicine. How can we prevent this?
Alternative medicine use is quite common among patients with cancer. Sometimes patients use it in addition to their allopathic treatment. A few patients totally eschew allopathic treatments and opt for alternative medicines alone. The experts in the panel felt that opting for these when there is a chance of cure in allopathic treatment must be an informed choice. Many times, the patients may be influenced by anecdotal reports or direct interaction with a practitioner of these therapies who “guarantee” 100% success with no side effects.
Suggestions from the panel
- We need to explore the factors which make a patient choose alternative medicine. Specific questions may be used to understand whether there has been any bad experience with allopathic medicines in the past. It must be made clear to the patient that there is no treatment available which offers a guaranteed cure. Many of the alternative systems are not administered by standard practitioners and generally, these are unable to “cure” diseases like leukemia. Some of them may be able to control the disease for a certain period but this may not be a desirable endpoint for a young person. Once the patient understands the pros and cons, it is up to him to make an informed choice.
- Patients must be counseled to understand that curative options are available now but may not be feasible if the disease progresses further and the general health of the patient deteriorates.
- If the patient is not convinced, their decision should be respected and they may be allowed to continue after taking informed consent.
When faced with questions about alternate therapies offering a “guaranteed” cure, physicians must tread carefully and take time and effort to explain to the patient. This counseling is best done by the lead physician himself. Again the focus here is to provide information based on literature as well as from the clinician's own experience to the patient and then allow them to make the choice.,
The scenarios discussed till now deal with patients who are reluctant for transplant mostly due to “extraneous” factors. Sometimes patients have to come to terms with the stress induced by the diagnosis and the need to assimilate the information given and the uncertain outcomes.
A 17-year-old girl is planned for allotransplant but she is badly affected with adjustment disorder. The team is worried about how the girl will cope with the stress.
Undergoing an HSCT is a high-stress situation [Table 3]. Moreover, they have to confront the ever-present danger and fear of disease relapse. There is a need for formal psychological assessment and counseling before considering a patient for this procedure. There is a high incidence of psychiatric morbidity during HSCT which can be reduced to an extent with a formal assessment and counseling in pretransplant, acute, and transition phases of HSCT procedure.
Suggestions from the panel
- Patients should be assessed for their psychological issues and concerns and appropriate intervention should be initiated in the pre-transplant phase. This can be done by a qualified psychiatrist or a trained psychologist with experience in dealing with these types of patients. This would enable to identify specific issues which trouble the patient and plan appropriate interventions.
- To manage the psychological issues that occur during the transplant, the healthcare team including the doctors and nurses involved in the process must be aware of the symptoms, should screen for the same at regular intervals, and give timely referrals to the psycho-oncology team.
All patients planned for transplant must undergo a formal psychological assessment to sort out issues before the procedure.,
There are a few problems that arise after the transplant process which may be complicated in many patients and require them to be in contact with the health system for a prolonged period—which may vary from few months to few years. Some patients may develop complications that may require them to be admitted multiple times to the hospital. The next scenario describes a person who develops problems after the transplant process is completed. Even in patients who successfully complete the process, there is a need to rehabilitate them and get them back to their earlier lifestyle.
A 40-year-old man successfully completed 1 year of his allotransplant which was done for relapsed leukemia. But now he is suffering from GVHD. He wants to get back to his work but he cannot due to his mental block. How can the team help in the rehabilitation of transplant survivors?
Generally, the concentration of care is on patients awaiting and undergoing HSCT. But those who successfully completed HSCT are also equally important. Currently, we don't have a program to assess the needs of a transplant survivor. The discussion ended up suggesting a new team for the rehabilitation of HSCT survivors.
Suggestions from the panel
- The survivor has to be carefully examined for all possible physical, psychological, emotional, and social issues by the healthcare team during follow-up visits and these need to be addressed.
- Rehabilitating a survivor involves an integrated approach involving the healthcare team, NGOs, and policymakers.
- Forming survivor networks and peer support groups can help in handling many of these issues.
Even after successfully undergoing a transplant, a patient may face psychological issues during his survivorship. Continuation of care and support during this period is very important. The issues which potentially affect this period were identified by the discussants and are detailed in [Table 4] with possible solutions.
|Table 4: Survivorship issues in patients who have successfully completed transplantation|
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| » Conclusion|| |
We have attempted to discuss challenges in counseling patients undergoing HSCT [Table 5]. These problems differ in each country based on the sociocultural and economic situations and level of awareness of the patients and their families. There is a gamut of concerns on a patient's mind that need to be allayed—that is, the need, benefits, and risks of the procedure, the myths and stigma associated with transplant, the physical and mental changes that occur, and the psychosocial impact on the family. Importantly, the patient's family and donors should be involved in the process and the monetary burden, both immediate and future, should be discussed with patient and family with an awareness of the latest available government and nongovernment schemes. Late toxicities and survivorship support should be extended to the patient.
|Table 5: Summary of the psychosocial issues to be addressed while counseling a patient of planned for hematopoietic stem cell transplantation|
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Hence, psychosocial support and assurance through counseling and cognitive psychotherapy should be an integral part of the entire transplantation process—starting in the pretransplant period, continuing into the peri-transplant time, and finally extending into the long-term survivorship period. Since the challenges faced by the patients traverse multiple dimensions, only a comprehensive team involving, physicians, nurses, psychologists, or psycho-oncologists and social workers can do justice to the process of counseling. Every transplant unit should strive to put in place such a team that can provide counseling support which is tailored for individuals and their families.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]