Imagine your child has cancer. Or your sibling or parent. It is the worst kind of cancer–a brain tumor–and it’s growing. Your family member’s symptoms, at first just a headache, grow more severe. He is having problems with his vision and balance and is in pain. One day the pain becomes unbearable. The situation is dire, so you take him to the emergency room.
You and your loved one are ushered back to speak to the triage nurse. You desperately want your family member to receive medical treatment as soon as possible.
“What are your symptoms?” asks the nurse. Your loved one is too ill to answer, so you describe his pain, your fear that the cancer is growing worse, the need for urgent treatment.
“Do you feel like you are at imminent risk of dying?” the nurse asks your loved one. He is doubled over in pain and unable to answer.
“What kind of question is that?” you respond. “No, he is not at imminent risk of dying, but the cancer is clearly getting worse, and he needs treatment now!”
“I’m sorry,” she says, “but the illness is not severe enough for treatment. Unless he is in danger of dying, we can’t admit him. Come back when he is in stage IV.”
Shock and disbelief rush in. The nurse goes on to explain that not enough hospital beds are available for cancer patients. The hospital had to reduce the number of beds for cancer patients because laws are in place to discourage inpatient treatment. People shouldn’t be forced to receive treatment in a hospital when they could get it in a less restrictive environment in the community, she tells you.
“But he needs inpatient treatment,” you plead. “The kind of care he needs is not offered in the community.”
“I’m sorry,” the nurse says. “There’s nothing we can do for him unless he is close to death.”
“Wait!” you say, willing to do or say whatever it takes to get your loved one treated. “I misspoke. He is close to death. He needs help immediately.”
The nurse relents. He will be admitted after all, but first you need to wait for an available bed.
You wait. And wait. It is midnight, and still, nothing is available. You spend the night, assuming it will be a matter of hours. You wait again the next day. Then, the nurse tells you it may take several days before a bed opens up.
You can’t believe it. Don’t they realize how serious a brain tumor is? With each passing day, you envision the cancer growing, metastasizing. You know that once it spreads, the damage cannot be undone. Meanwhile, your loved one is suffering, and the pain is becoming unbearable.
After five days, a bed finally opens up. You exhale with relief. Your loved one is transported to the cancer unit, and you decide to go home and rest.
The next morning you call the hospital, eager to see how your family member is doing. Your call is transferred to the cancer unit, and you ask for him by name.
“I’m sorry, but we can’t confirm or deny that anyone is here by that name,” says the woman on the other end of the phone.
“What?” Your mind is swimming with confusion. “I know he’s there. He was admitted yesterday. I’m a family member.”
“I’m sorry,” the woman persists. “We have to protect patient privacy, so I can’t reveal any information about our patients.”
This is absurd. Whenever you have called other family members or friends in the hospital, you have never received this response. But then, you have never called anyone on the cancer unit before.
You drive to the hospital. Thankfully, a staff member lets you into the unit to visit your loved one. Once you enter, she locks the door behind you.
“You’ll have to leave your cell phone in a locker,” the staff member informs you. “And your purse and jacket. Also, you can’t bring in any snacks or drinks for your loved ones.”
“Why?” you ask.
“Those are the rules.”
“What about books?”
“You can leave the books at the front desk. If they are approved, we will bring them to your loved one,” responds the staff member.
You wonder why these rules are in place, especially since they exist only for the cancer ward and not the other units.
Finally, you see your loved one. You learn that despite being admitted 12 hours ago, he has yet to see a doctor. The nurse gave him some medication for his pain, but no one has taken his history or asked about his prior treatments and medications.
You find a nurse and ask to speak with a doctor. She tells you a doctor will make rounds tomorrow but you will not be permitted to meet with him.
“Look, I need to speak with the doctor.” You are getting angry, but try to keep your voice even. You explain that you have vital information to share about your loved one’s illness and prior treatment. You want to learn what is happening with the cancer and how the doctor will treat it. Instead, she tells you that a social worker will call you later.
You remember when your father was admitted to a hospital last year for chest pain. It was nothing like this. You were allowed to stay in his room while the doctor visited, which gave you the chance to ask questions and learn about the tests and treatments he would receive during his stay. You were a welcome partner in his care. You wonder why the process is so different in the cancer unit. Why wouldn’t the doctor want input from a family member?
Your loved one stays in the hospital for a week. He receives medication for his pain, but he is still experiencing other symptoms. On the eighth day, the social worker calls and says he will be discharged the next day.
“But he’s not ready!” You plead with her not to discharge him.
“The insurance company will no longer pay for treatment after 10 days. His pain seems to be better, so we can’t keep him here any longer.”
You are powerless. Your loved one is discharged without receiving medically necessary treatment.
You know the illness is progressive. It will only get worse.
You are shocked by the indifference to your loved one’s suffering. The blatant discrimination of the system. The cruelty and unjustness of it all.
The scenario described above is a realistic depiction of the discrimination faced by people with serious mental illness and their family members in the U.S. Discriminatory laws and practices deny medically necessary treatment for people with psychiatric illness.