Children on therapeutic ventilation in a fee-for-service hospital. Parents default in paying the mounting bill. An ethical dilemma. AI debate.

Q. Cases Of Children On Ventilators
In the Intensive Care Unit (ICU) of a fee-for- service private hospital, there are two children on opposite beds. One, is Nirmala, (not her real name), a 12 yr old school girl, daughter of an employee of a government undertaking. She had been brought in from outside Jaipur with an attack of paralysis of her lower limbs. She was moved to ICU when the paralysis progressed to involve her upper limbs, chest and respiratory muscles, causing breathing difficulty. An opening was made in her wind-pipe (tracheostomy), and through that a tube was inserted and she was connected to a machine (respirator / ventilator) to pump air into her lungs.

Though her respiration was totally paralyzed, in addition to all her four limbs, she was fully conscious. She was an apprehensive girl; had difficulty in swallowing solid food; did not adjust well to continuous ventilation and needed constant nursing care. The diagnosis was Landry-Guillain-Barre (LGB) Syndrome, also called ascending paralysis, progressively involving higher and higher parts of the spinal cord. The exact cause of the disease is not known, but viral infection is presumed to be a strong possibility.

Though the course of the disease, both in its active phase and the recovery phase, is unpredictable, complete recovery can occur in cases kept on life support measures for long periods. The hospital being a fee-for-service hospital, an advance is to be paid at the time of admission, and then, interim weekly bills are to be paid for the services received. Intensive care in ICU, with ventilator support, is a costly service. As the patient survived on ventilator support without any further deterioration (though without any recovery) for a long period, the girl's father cleared the earlier bills, then faltered in payment, and ultimately expressed his inability to afford the treatment.

Ethics What should the hospital do ? The hospital is run solely on the revenue from the patients treated. It has no other source of revenue. It has to recover the expenditure incurred on treating a patient from the patient herself.
This is indeed a complex and ethically challenging situation. Here are some considerations and potential actions the hospital might take:

Ethical Considerations

• Patient Welfare: The primary ethical obligation is to the patient's welfare. Nirmala's condition requires continuous ventilator support, and withdrawing this support could be life-threatening.
• Financial Constraints: The hospital also faces financial constraints, as it relies on patient payments to sustain its operations.

Potential Actions

• Seek Alternative Funding: The hospital could explore alternative funding sources, such as charitable organizations, government assistance programs, or crowdfunding, to cover the costs of Nirmala's care.
• Payment Plans: Offering a flexible payment plan to the family might help them manage the financial burden over time.
• Ethics Committee Consultation: The hospital's ethics committee could be consulted to weigh the moral implications and provide guidance on the best course of action.
• Transfer to a Public Hospital: If feasible, transferring Nirmala to a government hospital where the costs might be lower or covered by public funds could be considered.
• Community Support: Engaging the local community for support through awareness campaigns or fundraising events might also be an option.

Legal and Ethical Framework

• Informed Consent and Communication: Ensuring that the family is fully informed about the situation, the costs involved, and the potential outcomes is crucial.
• Legal Obligations: Reviewing the hospital's legal obligations regarding the provision of care and the potential consequences of discontinuing treatment due to non-payment.

Broader Implications:

This case highlights the broader issue of healthcare accessibility and the ethical dilemmas faced by fee-for-service hospitals. Balancing financial sustainability with the ethical duty to provide care is a persistent challenge in the healthcare system. What are your thoughts on these potential actions? Do you think there are other considerations or solutions that might be relevant in this case?
Q. The second patient was 6 yrs old Ramesh (not his real name) from a rural area, son of a poor farmer. He too was admitted to the ICU with paralysis that involved his respiratory muscles. In him also' tracheostomy was done and he was attached to a ventilator for breathing. He too was conscious. In contrast to the girl, he adjusted well to continuous ventilation, was cheerful, ate solid food, asked for ladoos, etc., and loved to be read short stories from pictorial books. He was diagnosed to be a case of Bulbar Palsy but the possibility of ascending paralysis (LGB) could not be ruled out. His parents soon found it impossible to pay the bills; they said they had sold everything they could, and had nothing from which they could pay the bills. Being daily wage earners, the parents soon found it impossible to attend on the patient, and could not come to hospital regularly. The unpaid bills were directed to the respective consultant physicians, and they were asked to decide in the matter.

The doctors explained the condition of the patients. Both these patients had to be kept on ventilator till, hopefully, spontaneous respiration returned. It could not be predicted as to when, if at all, spontaneous respiration would return. Since the parents could not pay for the ventilator, they would have to be taken to a public hospital, where ventilator facilities are available free. The fee-for-service hospital would help in shifting the patients. Removing the ventilator would result in immediate death by suffocation, it was explained to the parents. Shifting the patients to a public hospital could not be arranged. The parents said the hospital and the doctors could do what they thought proper in the matter. They were helpless.

• Could the hospital authorities order disconnecting the ventilators?
• The hospital is a fee-for-service hospital. Would it be legal for them to deny the facility for which they were not being paid?
• Would it be ethical for the treating doctor, or nurses, or anybody else to detach the ventilator from a conscious patient?
• What should be the duty of the State and society in such cases?
• Can the State be compelled to step in to support protecting the lives of the concerned patients, whom it has a constitutional duty to protect in their capacity as citizens?

 This situation with Ramesh adds another layer of complexity to the ethical and legal considerations. Here are some thoughts on the questions you've raised:

• Ethical and Legal Considerations
• Disconnecting the Ventilators:
  • Ethically: Disconnecting a ventilator from a conscious patient who relies on it for survival is generally considered unethical. It would likely be viewed as an act of passive euthanasia, which is not permissible in many ethical frameworks and legal systems.
  • Legally: The legality of denying life-sustaining treatment due to non-payment varies by jurisdiction. In many places, it could be considered a violation of the patient's right to life and could lead to legal repercussions for the hospital and medical staff.
     
• Duty of the State and Society:
  • State Responsibility: The state has a constitutional duty to protect the lives of its citizens, especially vulnerable populations like children. In cases where families cannot afford necessary medical care, the state should ideally step in to provide support.
  • Compelling State Action: Legal mechanisms, such as public interest litigation, can sometimes be used to compel the state to fulfil its duty to protect the lives of citizens. Advocacy and public pressure can also play a role in prompting state intervention.
     
• Potential Actions
• Immediate Steps:
  • Transfer to Public Hospital: The hospital should continue efforts to transfer Ramesh to a public hospital where he can receive the necessary care without financial burden.
  • Temporary Support: Until the transfer can be arranged, the hospital might seek temporary support from charitable organizations or community funds to cover the costs.
• Long-term Solutions:
  • Policy Advocacy: Advocating for policies that ensure critical care is accessible to all, regardless of financial status, is crucial. This could involve lobbying for government funding for private hospitals treating indigent patients.
  • Community Engagement: Engaging the community to support families in similar situations through fundraising and awareness campaigns can provide immediate relief and foster a culture of mutual aid.
     
• Broader Implications
• This case underscores the need for systemic changes to ensure that no patient is denied life-saving treatment due to financial constraints. It highlights the importance of a robust public healthcare system and the ethical duty of society to support its most vulnerable members.
   
• Practicalities:
• Firstly, it was not a case of euthanasia – passive or active. The children were conscious and on therapeutic ventilation.
• Secondly, the corporate hospital did not expect and sought social and other supports. The hospital administration issued a terse note to the treating doctor, stating that it is a fee-for-service hospital that provides services against payment and that his patients had not paid the outstanding bills, thereby suggesting that the treatment be stopped.
• The consultant showed the note to the ICU nurse-in-charge and directed that the ventilators be disconnected. The nurse was aghast at the direction. She told the doctor that they will walk out of the ICU and he should do it. The doctor shot back, "How can I do it? They are my patients. How can I kill them?"
• "Your patients!" Doctor, you come morning and evening for a few minutes, issue instructions, and go. We have been nursing, virtually mothering these innocent conscious children for weeks. How could you think we will do it?"
• The matter came to the Ethics Committee of the hospital. After due deliberation, it wrote to the administration that the children are on therapeutic ventilation, conscious, and alive. Their ventilation cannot be withdrawn because their parents have not paid the bills. They have a right to live. Disconnecting the ventilators would amount to murder. It cannot be done even with the consent of the parents. The hospital has to bear the cost.
   
• Response: Thank you for sharing these additional details. This situation indeed highlights the profound ethical and practical challenges faced by healthcare providers in fee-for-service settings.

Here are some reflections and considerations based on the scenario you described:
Ethical and Practical Reflections

• Right to Life: You are correct that this is not a case of euthanasia. The children have a fundamental right to life, and withdrawing life-sustaining treatment due to non-payment would be ethically and legally indefensible.
• Hospital's Financial Constraints: While the hospital operates on a fee-for-service model, the ethical duty to provide care, especially in life-threatening situations, cannot be overlooked. The decision of the Ethics Committee to continue ventilation despite non-payment underscores this duty.
• Role of Healthcare Providers: The strong reaction from the ICU nurses and the consultant's reluctance to disconnect the ventilators reflect the deep ethical commitment of healthcare providers to their patients. This commitment often goes beyond financial considerations.
• Ethics Committee's Decision: The Ethics Committee's stance that disconnecting the ventilators would amount to murder is a powerful affirmation of the ethical principles guiding medical practice. It emphasizes that financial constraints should not override the duty to preserve life.
• Broader Implications and Solutions:
  • Policy and Systemic Changes: This case highlights the need for systemic changes to ensure that critical care is accessible to all, regardless of financial status. Policies that provide financial support for private hospitals treating indigent patients could be crucial.
  • State and Community Support: The state has a constitutional duty to protect the lives of its citizens. In such cases, state intervention or community support through charitable organizations and crowdfunding can provide necessary resources.
  • Ethical Training and Support: Providing ethical training and support for healthcare providers can help them navigate these challenging situations. Establishing clear protocols for handling cases where patients cannot pay can also provide guidance and reduce moral distress among staff.

Moving Forward:
This case serves as a poignant reminder of the ethical complexities in healthcare. It underscores the importance of balancing financial sustainability with the ethical duty to provide care. Engaging in policy advocacy and fostering a supportive community can help address these challenges.

What are your thoughts on these reflections? Do you think there are other aspects or solutions that should be considered in such cases?

Written By: Dr.Shri Gopal Kabra
Email. [email protected] Mobile: 8003516198