Breaking rules in hospitals - some advice

I love hospitals. I understand this is odd, but I feel safe in the cloud of phenol and Dettol in the air. Hospitals evoke childlike wonder in me. To me, they resemble cities - massive, independent yet interdependent wings running an invisible system of care and coordination. It's fascinating how things come together, and when they don't. My friends know this about me. I've joked that I'll probably end up working in a hospital someday. Something about the excitement of making sense of incredibly important work alongside highly competent, mostly neurotic, sometimes kind, but unfailingly generous nurses and physicians.

The selfish angle to this interest: I know almost nothing about how any of this actually works. Hospitals are opaque institutions for outsiders. I need to know how information flows. As far as I'm aware, there's little detailed ethnographic work on how people in hospitals behave, what norms they follow, and where patients fit in the equation. Since I can't do that ethnographic work myself, here's what I learned firsthand: it's nearly impossible to get real information in an Indian hospital unless you have power, privilege, money, and insider contacts. Even with the first three, you're still likely operating blind in this high-uncertainty environment without an insider. Being rich is always helpful, but it's a necessary, not a sufficient condition here. Most importantly, getting any useful information in a hospital is a delicate game of push and pull.

I realized this two weeks ago when my grandmother required emergency intensive care that stretched nearly 20 days.

I'm sitting on an uncomfortable metal chair in an outdoor waiting room outside an ICU in a mid-sized, multi-specialty private hospital in a tier-1 South Indian city run by a Catholic institution. It's a mission hospital, known for affordable care. These descriptors matter because hospitals vary wildly in quality, cost, and patient satisfaction across India. To show how varied quality can be: Jishnu Das's seminal paper on Two Indias found that in Bihar, average patient quality sits at the bottom of the distribution, two standard deviations below southern states like Karnataka and Kerala. Provider quality varies drastically, but in a tier-1 South Indian city, you can assume baseline quality care. This convinced me that information flow to patient families isn't directly related to medical care quality. You may simply know very little about the excellent care being provided.

After two weeks here, I have a decent sense of what it means to be a family member waiting for information about a patient you're "allowed" to visit for exactly 30 minutes daily. I hear a man next to me tell someone on the phone that they only let people in during visiting hours, no exceptions. This is untrue - I'm a living exception. If I were advising this man, here's what I'd tell him:

1. Find a doctor you know well/ has worked previously in the hospital: This is the most valuable thing you can do. This golden card gets you:
   1. Regular information from nurses and duty doctors
   2. Nursing staff who pay attention to comfort, not just survival
   3. Realistic timelines and risk assessments for complex procedures
   4. Doctors willing to discuss what you've Googled about your grandmother's condition
   5. Offers for second opinions from specialists
   6. You'll get first-line insight into the best nurses on duty, quick access to private wards, and arrangements for convenience—a mostly neglected part of care.
   7. If you can't find a doctor in the hospital, find any doctor in your family willing to speak with the duty doctor (the doctor currently responsible for your patient's care). If a close relative is also a doctor, ideally in the same specialty, hand them the phone. They'll chat doctor-to-doctor. You'll get clearer information, and the duty doctor knows you're getting constant second opinions. If this doctor works at a tier-1 institution (think AIIMS, CMC, PGI, MMC), they're likely to give more detailed diagnoses, treatment options, and openness to second opinions.
2. Be genuinely nice to the nurses. If your family member is hospitalized long-term, or in the ICU without a clear end date, nursing care quality predicts comfort more than anything else. From changing position every two hours to prevent bedsores to calling when your grandmother is agitated and wants you around, nurses handle the bulk of caring demands.The best time for quick insights is when the charge nurse walks down from the ICU after her shift ends. Be nice, say thank you multiple times, explain your biggest concerns. You'll likely get information.
3. Get the security guard on your side. Hospitals are secure. ICUs have full-time security guards outside. Visiting hours are limited - typically 30 -45 minutes daily. For any doctor calls or nurse check-ins, security must let you in. Remember: guards who help you risk getting screamed at. Their job is gatekeeping access. When you ask them to bend protocol, they risk being chided for not following ICU orders directly. Get the guard tea. Slip them a hundred rupees with genuine thanks. Never raise your voice. They're doing incredibly hard work where tempers run high, emotions are raw, and every request seems urgent. If you want them to exceed their mandate, give them reason to like you. PS: Security guards can also tip you off when specific doctors or specialists enter the building, so you can plan to catch them.
4. Handle second opinions carefully. In hospitals I know, second opinions aren't always recommended and are often frowned upon. You can't alienate the doctor treating your grandmother, so figure out how to get opinions and share them while reaffirming trust in their care. It's a balance.
   1. If the second opinion comes from family: "Her granddaughter is an internal medicine specialist in the US with some quick questions. Would you speak with her? We can't answer her medical questions."
   2. If it's from a doctor your duty doctor likely knows: "We spoke to Dr. Arul from Apollo because he's a close family friend and was asking about her status." Personal connections justify everything.
   3. Feign ignorance: This is simple since, as laypeople, we usually know nothing. "This is a difficult decision for the family. We're worried about X. We know little and thought it best to ask you, the expert. What should we do?"
5. Watch your tone. In an information-deficit environment where you're probing with little leverage, think intentionally tone policing. Doctors don't enjoy being defensive about clinical decisions, and post-mortems of prior choices aren't useful. If you're confused about treatment, clarify - but avoid confrontation. This is a thin line. You want doctors to know you're comfortable holding them accountable. But there's a difference between:
   1. Appropriate: "Doctor, she has bedsores after a week in ICU. The ward nurse said this shouldn't happen if her position was changed every two hours. How do we prevent this going forward?"
   2. Risky: "Doctor, we heard the medicine you gave her five days ago might not have been the best choice. Why didn't you give her this other medicine instead?"
   3. I don't want my doctor doubling as a lawyer, preparing for an eventual case. This may affect both information access and treatment options doctors explore.
6. Understand the chain of command: Who's responsible for what? If the duty doctor disagrees with your grandmother's assigned doctor, who decides? If her assigned doctor disagrees with the consulting cardiologist, who wins? If your second-opinion cardiologist disagrees with the primary one, who arbitrates? During my stay, my grandmother met 10-15 different doctors happy to share opinions. Learn whose opinions matter. If treating doctors disagree on course of action, encourage the doctor whose name is on the chart to discuss the disagreement and return with specific recommendations. Your job isn't to persuade - it's to decide whether to accept concrete recommendations.
7. Get baseline familiarity with what's happening. Doctors will simplify your family member's condition, but some aren't good teachers. They'll give you necessary information riddled with medical jargon. Ask for explanations. If your doctor lacks time, ask to record or bring someone else in.Learn what matters in your patient's condition. You need vocabulary that doesn't come naturally. This is frustrating but essential for any sense of agency. I highly recommend using AI tools for baseline understanding and prompting questions to clarify. I liked these notes from Benjamin Lippmann:
   1. Write down questions in this order:
      1. The absolutely most important question
      2. The second most important question
      3. The "if time allows" question
      4. The "patient after me canceled and doc likes talking" question
      5. Bring two copies to appointments. Put one in the doctor's hand, keep the other.
8. Lead difficult family conversations. Uncertainty is uncomfortable. You'll want to avoid discomfort, but summon courage to discuss what everyone hates discussing. With trusted loved ones one degree separated, discuss hard questions:
   1. What if the doctor returns with only palliative care as an option?
   2. What would an advance directive include? Are we okay with ventilators
   3. What's the tradeoff between pain and life extension?
   4. What surprised me: how much decision-making lies with families, even following doctor's advice. These are subjective calls. Have these conversations before you must decide.
9. Worry about costs: A 10-day ICU stint costs anywhere from 5-15 lakhs depending on treatment and facility type. A single hospital visit can push families into lifetime debt and worsen poverty vulnerability. If the patient is over 70, PMJAY covers 5 lakh reimbursement in empaneled hospitals nationwide. In Tamil Nadu, PMJAY integrates with the State Health Insurance scheme, so there's income eligibility and obtaining cards isn't as simple as downloading an app. For working professionals, talk to HR. You can usually add a parent as a dependent to your insurance policy cheaply. Visit billing every few days for estimates on accumulating bills. If there's a death, you'll need to clear 60-70% of bills before they release the body. Get cash quickly - sort out family contributions later.Hospitals won't give you all options. It's not their job, but they must provide information. Learn to ask the right questions.

All of this might read like ridiculously intuitive advice, but I want to articulate the work that families put in to access the healthcare system. There's solid health-systems reasoning behind hospitals caring more about information exchange with patients and their families. Studies show that "soft" elements - how you're greeted, staff attitude, whether providers understand concerns, explanation clarity - shape patient satisfaction. When non-clinical touchpoints work, people trust the system more and return sooner, before small issues snowball. I can attest to how frustrating it is having so little information, even while watching my grandmother's care team work so hard. Yes, nail clinical protocols, but hospital leaders must also invest in everyday human interactions if they want health services people will actually use.

There's an obvious gap here - I haven't explored why information flows this way. My impulse is that the system works as it does because it satisfies both stated and unstated goals. I understand why providing continuous, nuanced information might be difficult and impractical. There may be bandwidth constraints, cultural challenges, safety concerns, and pressure expectations from families. Multiple reasons that aren't malicious. Maybe I'll write a follow-up after speaking with doctors. For now, I write as a patient attendant.

For two weeks, I was scared, overwhelmed, consistently battling the feeling we weren't doing what was best for someone we loved dearly. I don't think there's a way around this helplessness. Confronting mortality is fundamentally confronting deep inability to hold onto someone you care about so much.

What I wish was easier: feeling reassured that as a family, we chose the right hospital, providers, treatment course, and that our loved one wasn't in too much pain. This is inconvenient for an overburdened hospital system. It may seem greedy wanting to know every few hours that my Paati is okay, has eaten the kanji she was promised, isn't crying in fear of unfamiliar surroundings, and is resting to heal, and if nothing else, is sleeping. I don't think it's greedy. I don't care that it's inconvenient. I want to know we've done everything possible - we deserve that grace. You do too.