What If Mental Illness Were Cancer?

What if mental illness were cancer?

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. 

17 thoughts on “What If Mental Illness Were Cancer?”

  1. These illnesses are so cruel. I share your grief as a mother. The laws are unjust and misguided. I pray we will find recourse in our lifetimes. I am so grateful to people who are advocating with lawmakers. Thank you for helping this woman, her daughter, my daughter, and me… and so many others I know. I pray for your success in changing things. Peace to all who read this.

  2. The HIPAA handcuffs I dealt with for a decade have left me paralyzed in my knowing where to begin again. And my daughter’s rights have left her with psychosis so deep she will not engage in any form of communication with me. She is 600 miles away and I send her cards and leave texts with the man who she trusts who provides her shelter. Response is rare. I must be content with this. Her illness began showing via self mutilation which began her therapy at age 14 and she left school and home at 17. She fell in love in Golden Gate Park with a young man at 18 whose mother, a social worker, got her into Rutz to get her GED and job training and an apt. She seemed to excel gaining employment and affording along with her then boyfriend’s pay their own apt together. 2 years later she quit that job and he lost his and I helped them move out the day of eviction. Then the months living with me followed and she refused counseling. The boyfriend picked her up and they returned to San Francisco to live with his mom. All had fallen into meth addiction by then and my daughter’s mental illness progressed into psychosis. Homeless for periods of time. Sheltered by the man who watches over her now. Two years of months with me the last Jan 2018-May 2018 where any word I said was spoken over by her in gibberish to willingly not converse. And she said it was her house and everything in it was hers. And she bagged items and hoarded them floor to ceiling. There was no bed anymore for her to sleep in. That had become floor to ceiling layers of bags containing bathroom supplies, jewelry, even trash. The bags spilled into the hallway and then dining room. She demanded Mickey’s malt liquor and Camel cigarettes. The yard was also taken apart haphazardly. My own mental health declined to suicidal thoughts. My ex puther on a bus to return her to San Francisco ti “save me”. Because the police were paralyzed to intervene. Because my daughter said “I am fine. There is nothing wrong with me.” My daughter in San Francisco was then homeless and arrested and jailed in 2019. The judge ordered drug rehabilitation at Walden House. My daughter walked out of the facility the next day. The man who gives her shelter rarely replies to my texts. It seems that he gives the phone to my daughter to read. The last reply was from her , after I wrote “Happy Birthday Stephanie!” I know because it said “aha’s*t” and I don’t know what that means. I must be okay knowing my daughter is alive. I must keep writing to her. She is now 32. This story would be different had there been a path for care for me to follow when she was a teenager. A path that included me in her care. Even then I was excluded. Even though she was then a minor.

    1. I am so sorry for the nightmare you have been through. You shouldn’t have been excluded in her care, especially in the beginning when she was a minor. Letting a person with psychosis refuse treatment quite often results in homelessness and jail, as it did in your daughter’s case, or worse. How is it OK by society to let a person get more and more severely ill while not allowing families to intervene? I am glad you are writing to your daughter and I hope she is able to connect with you at some point. Good luck to you.

  3. You have nailed it exactly. I have had this discussion/debate with ER teams as we’ve navigated all of this with our daughter (dual diagnosis with intellectual disability…that’s a whole additional layer of angst and complexity), with one inpatient psychiatrist who actually wanted to talk about the challenges, and with several of her outpatient team. My scenario has always been, if someone was having acute cardiac symptoms, would you tell them to come back for treatment when they’re actually having a heart attack? Because that’s the ticket to inpatient treatment with several mental illness – harm to self or harm to others. To me, it equals medical malpractice and yet the societal mentality and system designs enable it. And if involuntary commitment is involved, that includes a defense attorney and a prosecutor as if they are a criminal.

    Thanks for speaking out through your blog. Much appreciated. Is there a way to subscribe?

    1. Right, it does seem like malpractice. It is unbelievable that our society thinks this is OK. Everything about the system is backwards, and it’s so hard to get a family member help. Thanks for reading the blog. I need to add a more prominent subscribe feature, but if you scroll to the bottom of the comments you should be able to check a box to subscribe.

  4. Mental Illness is the “no casserole” disease. With other diseases, friends will be supportive, bringing by a casserole to help soothe the situation and so you can keep up your strength… but no casseroles, no calls, no visits when your loved one has a MI.

    1. That is so true. I think people with no experience believe having this type of brain disorder is something to be embarrassed about, and that is why they don’t show up with a casserole and offer other support. But why should it be? It is a medical illness like any other.

  5. Yes a lot of this sounds familiar…My brother a patient in a Mental Hospital being neglected and ignored. Staff Obviously never checked on my brother in the morning and when they did he barely had a detectable heartbeat so that’s when they decided to send him to the hospital down the street and was immediately put on life-support and then we were called four hours later and when we arrived he died within five minutes…. JUST NO COMPASSION By our Mental Health Care professionals

    1. I’m so sorry. That is unconscionable. If he were being treated for a different medical condition, a nurse would have checked on him.

  6. In my family the same person who was treated for childhood kidney cancer and survived is the one who was diagnosed bipolar as a teen. My nephew is 30 now and it’s been heartbreaking and frustrating.
    There has to be a better way of helping people. We’re in Canada and the way you’ve described what you go through is so similar to what my parents tell me they’ve gone through trying to get help for my nephew. (His parents have little to no involvement in his life). I live in a different province so there isn’t much I can do to help besides emotional support.

    1. There truly is very little family members can do to get help for an adult with serious mental illness. Family members should not be shut out of participating in care and treatment for a serious illness. They are not excluded with other illnesses. It is indeed heartbreaking and frustrating for people who just want to see their loved one get medically necessary care.

      1. yes . and what other illness requires you to go to court to secure a level of guardianship just so Drs and Nurses can speak with you about your child’s care, without fear of breaking a hippa rule. ? and even with Guardianship in place , all you can do is use that to allow insurers and medical teams to speak with you. you still cannot make health care decisions for children over 18 that are in psychosis and have no insight into their inability process information correctly, and then if you are forntunate enough to have guardianship in place to speak with the Drs and try to coordinate care, and further lucky enough to land in an inpatient psychiatric care unit, if your child refuses treatment, will the hosiptal have the courage and commitment to file commitment proceedings with the state so that treatment can be started, and then the court has a 4-5 week backlog before they can hear the case, and some 3rd party patients rights advocacy group sends their lawyer in to argue that the person with SMI and no insight into their condition still has the right to refuse medication and other treatment… makes me wish every single one of those “rights” advocates would face this illness in their own siblings or children .

        1. No other illness requires this. It makes zero sense to shut out family members who only want their loved one to get needed medical care. The “rights” advocates truly do not get it. I wish they would listen and try to understand that by advocating for the person’s right to refuse treatment, they are advocating for the right to deteriorate and end up homeless, in jail or worse.

        2. The HIPAA handcuffs. It’s horrible. The healthcare system requires systemic changes with specific attention to brain disorders/mental illness. We can’t give up, even in the depth of our hopelessness.

          1. You are right on all counts. I’m hoping that the proposed changes to HIPAA will make a difference. The system needs to change to account for the unique nature of brain disorders–that is, that these illnesses impair the very organ that is responsible for decision making.

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