Management of Rehabilitation needs of “Unknown” Traumatic Brain Injury Survivors: A Medical and Psychiatric Social Work Perspective
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0028-3886.288985
Source of Support: None, Conflict of Interest: None
Keywords: Burden, rehabilitation strategies, unknown cases
Traumatic brain injuries related to road traffic accidents [RTA] are a serious health problem for people of all countries across the globe. Head injuries will be a leading cause of mortality, morbidity, and disabilities. Exceeding lawful speed limits, intake of alcohol/drugs  risky driving behavior, overloading or overcrowding of vehicle, defective motor vehicle, and bad roads contribute to RTA. TBI has a vital and substantial impact on patients and family members. Poverty, financial constraints, lack of resources within the family, and education are major reasons for being abandoned. TBI can affect physically, psychologically, socially, financially, and also reason for social exclusion. In addition, unconsciousness, cognitive deficits, loss of identity markers for individual to become “unknown”. Unknown patients represent a unique subset in metropolitan cities and managing them raises several medicolegal issues. Few studies conducted on unknown cases on adults and children are restricted to description of the clinical characteristics and treatment provided for them. All the review indicates the need for medical and psychiatric social workers, (MPSWs) to address the complex psychosocial and rehabilitation needs in the multidisciplinary team. Studies recognized the role of MPSWs but detailed notes on the role of MPSWs to meet the rehabilitation needs particularly of “unknown” TBI survivors which were not clearly stated. Therefore, the current research objective was;
Who are these unknown cases?
Patients who are found on the road presumed to be the site of the accident and whose identification and address cannot be ascertained either by the identity card or other means are termed “Unknown” patients. Therefore, Unknown can be defined as “the patient whose identity cannot be ascertained at the time of arrival at the hospital.” At times, the unknown becomes known once the family members or relatives or friends arrive. Later, the patient is left in the hospital by the family members due to various reasons are termed as “deserted” or “abandoned” patients.
Admission, treatment, and referral
The “unknown” cases that are bought to the hospital at emergency and casualty get admitted under a special category by the on-duty chief medical officer (CMO). If the person with TBI requires surgical intervention and medical observation during emergency period, he/she will be referred to a neurosurgery trauma care team immediately. At the time of admission, these cases are named Unknown 1, Unknown 2, and so on and are given a separate unique hospital identity number. Then, appropriate and necessary treatment would be initiated by the treating team. Law clearly says in section 4 and 5 that it shall be the duty of every hospital and every medical practitioner to immediately attend on every person involved in an accident or who is purportedly in an emergency condition as stated and afford the medical treatment as may be urgency called for. No physician shall arbitrarily refuse treatment to a patient in case of emergency, especially in RTA cases.,,
Sometimes, patients with TBI who get admitted by family members in an emergency will abandon (deserted) the patient in the hospital and leave. This is observed in clinical practice, especially in emergency situations. It happens due to variety of reasons such as fear in family members, unable to bear the treatment cost, lack of social support, inadequate knowledge, and poor resources to provide home care after discharge. In this scenario, these patients also would be considered as “unknown” till the family members are traced out by MPSWs and local police.
Consent in emergency and unknown cases
In our hospital, most of THE “unknown” cases are bought to an emergency situation with poor Glasgow Coma Scale (GCS) scores, hence, written informed consent is not a matter of priority in emergency conditions during RTA. The focus is only to save the life of the TBI survivor considering him/her as fellow-human beings.
The law says that it is well known that the patient must give valid consent to medical treatment. And it is his prerogative to refuse treatment even if the said treatment will save his or her life. The circle of legal development in the area appears to be almost complete when the apex court in India recently ruled that it is not just the consent or informed consent but it shall be prior informed consent generally barring some specific cases of emergency. If the medical practitioner attempts to treat a patient without obtaining proper consent, he will be held guilty under tort (civil) law. To standardize the practice, the Medical Council of India also had laid down guidelines that are issued as regulations in which it is stated that;
In case of emergency, the apex court ruled that a medical practitioner has a duty to treat a patient in an emergency. Even if there is no close relation of the victim available who can give consent for medical treatment. In one case, a court verdict says that consent under an emergency situation is not mandatory. Hence, the doctor on-duty is bound to treat a patient in the case of an emergency, without waiting for any formalities. In such cases, the obligation of a doctor is total, absolute, and paramount. With respect to role of welfare state, the Supreme Court stated that Art. 21 imposes an obligation on the state to safeguard the right to life of every person. Preservation of human life is thus of paramount importance. The doctor, when approached by an injured person, shall render all such help which is possible for him at that time, including referring him to the proper experts, the treating doctor shall be protected by law, as they are not contravening any procedural laws of the land jurisdictions by the verdict. No law or State action can intervene to avoid or delay the discharge of the paramount obligation cast upon members of the medical profession in emergency.
Once the surgery is over and the acute period is over, the “unknown “patient is shifted to head injury ward or step-down ward to provide further postoperative care and observation. In acute, subacute, and chronic stages, an “unknown” patient will be required to be looked after for the basic needs such as; change of diaper, feeds, change of position, posture, cleaning, medicine, and so on and meals needs to be prepared at regular intervals. During this time, if the patient needs to be fed through a nasogastric tube (Ryle's tube) and requires daily care including abandoned/deserted cases. Therefore, bedside assistance is provided by trained professional nurses and multiskilled staff under neurosurgeon's supervision on 24 × 7 basis until family members arrive or are traced by MPSW. This would be done at free of cost in our hospital.
Billing, finances, and insurance
When accidents occur and the victims are taken to hospitals, medical practitioners provide emergency medical care. Treatment cost of “unknown” patients in terms of medicine, surgical interventions, food, and necessary medical material will be borne by the hospital and entire bill is waved off under special category with prior approval of MS, RMO and the Director as per recommendation of the neurosurgery team based on the detailed clinical interview and financial assessment done by MPSWs in case of unknown and abandoned/deserted patients after identification of their family members if needed.
Furtherance, the Indian Law and Medical Council of India regulations say that; the physician engaged in the practice of medicine shall give priority to the interest of patients. He or she should treat the patient whether or not such a person is immediately in a position to make payment for screening or emergency medical treatment and without insisting on payment as a condition precedent. The personal financial interests of a physician should not conflict with the medical interests of patients. In a medical emergency, sometimes such persons may not be in a position to make payment immediately or that they have no insurance or that they are not members of any scheme which entitles them to medical reimbursement. However, hospital is duty-bound to accept accident victims who are in critical condition and it cannot refuse treatment on the grounds that the victim is not in a position to pay the fee or meet the medical expenses and on the grounds that close relatives/family members are not available.,
As we know the cost of the whole exercise is borne by the hospital and taxpayers in general. In our clinical practice, we have not seen an unknown patient having insurance and used the same for the treatment purpose after RTA. Therefore, we suggest there is high need to mobilize the financial resources for “unknown cases” which reduces the financial burden on the hospitals as well as the state. Hence, corporate social responsibility (CSR) funds need to be mobilized for the right cause rather than depending on the hospital and state mercy. In addition, for treating team, especially, MPSWs must show commitment, take lead role and approach the multinational companies (MNC) to mobilize the resources for the said purpose. The treating team also must support this adventure. MNCs must come forward to help the unknown/deserted individuals, people under difficult circumstances, the poor and the poorest of the poor to save their right to live in emergency situations as a social responsibility. Another way of helping “unknown” patients is creating corpus fund through mobilizing funds from philanthropists for the welfare and well-being of “unknown” and deserted patients is need of the hour.
Discharge and rehabilitation
The challenge in “unknown” and “deserted” patients is not in the emergency care which will anyway be taken care of as per the necessity in the particular case. The challenge comes with respect to discharge and rehabilitation. The majority of trauma care hospitals are designed to take care of the acute phase. This is more so in tertiary care hospitals. Studies show that severe TBI (100%), moderate TBI (50%), and mild TBI (10–20%) patients need lifelong support and care. Furthermore, RTA is one of the major causes of disability. Quadriplegia, paraplegia, brain damage, and behavioral disorders are some of the common disabilities among TBI survivors. The literature says that persons with disabilities are the poorest of the poor and weakest of the weak socially, educationally, and economically disadvantaged. With little data available on disability in India, it is estimated that nearly 5 million people with a TBI require rehabilitation services. Therefore, rehabilitation services in case of TBIs should cover physical, psychosocial, vocational, and economic rehabilitation. Studies also show that postdischarge stay of unknown, abandoned/unaccompanied person in the hospitals are increasing in India which in turn is creating a burden on healthcare professionals.
Further, outcomes of TBIs are linked to a number of factors such as age, injury mechanism and severity of TBI, presence or absence of a helmet, availability, accessibility, affordability, social support, poverty, and availability of efficient rehabilitation services. The constitution of India uniformly applies to every legal citizen of India, whether they are healthy or disabled and guarantees a right to justice, liberty of thought, expression, belief, faith and worship, equality of status and of opportunity, and for the promotion fraternity. Art. 14, Art 15 (1), Art 15 (2), Art. 17, Art 21, Art. 23, Art 29 (2), and Art. 32 safeguards the rights of people with disabilities. In this context, rehabilitation of “unknown” patients after RTA is gaining momentum because of constitution, disability act, unavailability of family members and disease impact on TBI survivors. Early initiation of the services in the hospital, involvement of family members, services being provided through community leaders, teachers, ASHAs, and so on creating employment opportunities are the immediate requirements.
With respect to discharge and rehabilitation of “unknown” patient, from the day of admission and referral made to MPSWs in the hospital by treating team, the MPSW team intimating the concerned hospital administration such as medical superintendent (MS) and the resident medical officer (RMO). In addition, get the necessary permission to initiate the rehabilitation procedure in close discussion with the neurosurgery trauma care team. Further, coordinate with other stakeholders such as police, non-governmental organizations, rehabilitation centers, and take necessary steps required for relocating the “unknown” patient either with the family members/home/rehabilitation center and shift the survivor to general hospital if necessary for further care.
The course of getting an unknown patient discharged goes through various steps rendered by MPSWs.
The objective of the public advertisement is to pass on the information and reach the concerned family members of unknown and deserted patients. In this regard, in the case of unconscious patients who are also “unknown”, the usual procedure is to obtain a photograph of the patient and give it wide publicity both in the neighborhood of where an accident has occurred, in the concerned police station, in the radio, and in the television channels. The problem in these cases would be the photograph may not be representative of the patient's face because of various facial injuries, swelling in the face, fractures, loss of teeth, and hair as many of the patients require shaving of the head. All these add up to make it difficult for identifying the person. Once these patients undergo surgery, the surgical incision and swelling due to incision further make the identification difficult.
The personal interview objective is; to get the basic personal details in order to reintegrate the unknown or deserted patients with family members. Once the patient comes conscious and still remains “unknown” the efforts are continued to find out the name and address of the family. The same procedure is followed in the abandoned patients. The interviews focus on collecting any information related to his/her personal and family details, friend's information, occupational description, contact information such as phone numbers, area of work, name of the owner, children's names, where are they studying, and so on. The information provided by the patients may be correct or partially correct. Sometimes, the information given by the patient is accurate enough to be traced. But not always can “unknown” become “known” even after continued tremendous efforts. Sometimes, the information might also be wrong due to cognitive deficits caused by TBI. Subsequently, serial interviews are conducted with conscious and medically stable patients after successful acute care.
The objective of the home visit is to locate the family members and integrate the patient with family members. Based on the information received from police at the time of admission and patients of “unknown” cases in personal interviews, MPSWs make home visits locally to identify and locate the right family members within the catchment area. The essential guidelines to do a home visit in the neurosurgical condition already reported previously. During home visits, if a patient's family members or relatives are discovered, MPSWs explain the purpose of visiting the home and empathetically pass on the information to the family members about how does he/she get admitted, who admitted, where accident happened, regarding admission, treatment, patient's current condition in the hospital, and ask for the convenience of the family members to come to the hospital to see the patient. The family members are required to bring notarized affidavit such as voter identification or AADHAR card to identify the “unknown” to “known” where the family members can be traced as per the information given by the patients.
The objective of the school, college and workplace visit is to explore the address and identification of family members as given by the patients. In this regard children of unknown patients or schools of an unknown child are approached as a medium of family reintegration. Therefore, MPSWs use school or college (patient's children might be studying), and workplaces (if any employers available) to identify the patient. Armed with the name of the child, the MPSWs team approaches the school/college authorities and inform the purpose of the visit and take prior permission to interact with the children separately, in the presence of school or college authority. The team then interacts with students of similar-sounding names to find out if the “unknown” person is known to them. Photograph of the patient if needed.
Based on the information given by the “unknown” patient, the job of the MPSWs is to locate the workplace with the help of local police. The employer (if found correct) is then interviewed and elicit further details about the patient's family members, address, and collect any documents available in the workplace to identify the address. During a workplace visit, if the family is found to be staying within a catchment area, MPSWs do home visits. If family is found to be staying out of Karnataka, the team initiates networking with the concerned state's police department and non-Governmental organizations (NGOs) to locate the home address to pass on the information about the patient to family members. Subsequently, efforts are taken to reintegrate the patient with the family with help of employer, treating team, local police, and hospital administration. MPSWs will take lead role and facilitate to reintegrate the patient with family members.
Networking with police personnel
Another mechanism used by MPSWs is networking with police personnel from the area where the patient was found at the scene of the accident and other states. It is another way to find out the link to the family and therefore the name. MPSWs periodically inquire about missing cases filed with them or about anybody who has come looking for a relative. It is important to note here that MPSW maintains a consistent network and coordination with the police at regular intervals. Sometimes, police personal may not accompany the unknown causes in the hospital on 24 × 7 basis due to their busy official schedules and increasing frequency of “unknown” cases. Hence, MPSWs will be at the forefront in networking with police personnel periodically.
Unknown becomes known and deserted
Sometimes to trace the patient name and address may be fruitful through any one of the above efforts. Sometimes, family members or relatives or friends do turn-up but based on the patient's condition they may not able to afford extensive care and creates a financial burden to take the patient home. Due to which they may desert the patient, hence known becomes deserted.
Liasoning with rehabilitation center's
In such cases of known becoming deserted, MPSWs liaison with rehabilitation centers and invite interested rehabilitation centers for assessment of the patient. If the patient is medically stable, ready for discharge from the hospital and meets the inclusion criteria of a particular rehabilitation center, logistics such as transport are arranged to shift the patient from tertiary hospital to concern rehabilitation center. At the time of discharge, a discharge summary and free medications are given to the patient. The nurse explains to the rehabilitation personnel the patient's current condition, medication timings, and required day-to-day nursing care. The MPSWs team along with the physician, police personnel, and multiskilled staff then accompanies the patient to the rehabilitation center. This is done with prior approval of RMO and MS of the hospital.
This is followed by frequent follow-ups made by the MPSWs team to the rehabilitation center to check on the patient. The treating team is also available at all times to answer any queries of the rehabilitation personnel and help in emergency situations. However, even after the patient has been placed in the rehabilitation center, the MPSWs team keeps up its efforts to locate the family and co-ordinate with concerned police personnel so that there is a chance, even if very slim, for the patient to go back to home. The main challenge is to find the name, address, and personal details of these people to trace out the family and then put in a suitable caregiving home if the name and address cannot be found. Therefore, nobody comes to take care.
The majority of the rehabilitation centers are home for the homeless. These centers are extremely overcrowded also operating on a shoe-string budget. Many of the centers are unable to take care of the patients confidently with medical and cognitive disabilities. There is a need for appropriate rehabilitation centers. In a developing country, underdeveloped economies are major challenges and these types of centres are extremely difficult to build and also to afford. Even, the high-income country requires lot of inputs from Government and Insurance Companies to set up medical rehabilitation center.
Family and patient education and psychosocial care
Sometimes home/school, college visit, public advertisement, networking turns out to be successful in tracing out the family members. Subsequently, if family members present to the hospital and patient (unknown or deserted) become known, in the subsequent sessions, psycho-education about illness (TBI causes, consequences, prognosis, family role, and support), importance of treatment regimen (medication, physiotherapy, cognitive retraining, social skills training, and speech therapy, if required) and need for long-term care, importance of periodical follow-up will be fixed to the family members. Providing emotional support, addressing the family member's distress, behavioral management, grief, and supportive therapy, helping in financial support for treatment is another type of psychosocial intervention provided by the MPSWs. However, these interventions are tailor-made as per the need. Further, family members are given the option to contact the MPSWs and clarify their queries at any point in time since MPSWs act as mediators between the treating team to ensure the best care after the successful reintegration of the patient with family through proper channel.
In case the “unknown” patient absconds from the hospital
Sometimes, a patient suffering from TBI absconds from the hospital while under treatment due to various reasons. These incidents are informed to the police immediately and a “missing” complaint is lodged to locate the missing patient at the earliest by treating team and hospital administration through proper channel.
In case of death of “unknown” patient
Unfortunately, some patients die during their stay at the hospital or rehabilitation center due to the severity of the injury or due to unrelated factors such as myocardial infarction. In such cases, the treating team, hospital administration, and MPSWs organize the cremation with the help of local police, community leaders and village representative, and rehabilitation personnel. The same is documented for future reference. [Figure 1] gives the strategies that are used by MPSW in the process of rehabilitation.
Role of non-governmental organizations
Most of the non-governmental organizations are keenly involved in promoting road safety measures, advocacy, and awareness on prevention of RTA, for example, Indian Head Injury Foundation, Youvraj Shivaraj Singh Trauma Rehabilitation Centre, Neurological Society of India (NSI), and Neurotrauma Society of India (NTSI)., NSI and NTSI in collaboration with the American Association of Physicians of Indian Origin have developed and recommended certain guidelines that are necessary for rehabilitation of TBI patients. They recommended that the goal of rehabilitation is; to achieve the employment, family, community, and society after TBI by survivors. To achieve this goal, guidelines emphasis that a physician-supervised multidisciplinary team in helping the TBI survivor reach maximum physical, psychological, social, vocational, educational potential, consistent with his or her physiological or anatomical impairment, environmental limitations and desires, and life spans. Therefore, there is a need to implement these guidelines at the earliest. Most of the time, these unknown TBI patients are placed in destitute homes where shelter, food, trained nursing professionals, doctors, and therapist are available to provide long-term care till family members are traced out. There are several reasons to place them in destitute homes i.e., there are no fully designed rehabilitation centers for TBI survivors available as well as the family members. The only option left is to utilize the available resources to the fullest to save the right to life.
Challenges faced by MPSWs
In patients who sustain injury and do not have a known person to accompany/take care, medical treatment can be delayed. The MPSW faces a number of challenges during the entire process of rehabilitation. Some of the challenges could be multifactorial include getting first aid at the scene of the accident, traveling long distance, delay in reaching the hospital, body disfigurement due to pre and postoperative surgical procedures, fears and barriers of bystanders regarding getting involved in accident cases, subsequently with the police, and so on are challenges in the process of successful rehabilitation. Other challenges include networking with various stakeholders, finding out families of people who have migrated, finding appropriate rehabilitation organizations fully designed for TBI persons. Sometimes patients have absconding tendencies.
In conclusion, the existing rehabilitation centers are not sufficient enough to provide optimum care to the needy. Increasing neurorehabilitation needs are challenging for treating team. Hence, holistic approach is the need of hour.
We thank Prof. N. Krishna Reddy (Late), Department of Neurosurgery, Good samatarians and non-Governmental organizations.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.