One of the most difficult jobs in my over 40 years of medical practice is giving a patient or their family the bad news.
It’s never easy to break it to someone that an untoward ending is inevitable. The problem in my field of practice (Pediatrics) is whom you disclose sensitive and delicate information to. The worst part, is who decides their ultimate fate?
I’ve had several teen patients who lost their battle with leukemia in the past few weeks. While it was the oncologist who was managing the primary disease, I was at the other end trying to control the infection. With the infection under control, it would be a continuous cycle of the disease fighting to gain an upper hand in the battle for life. With the vicious cycle, the patients eventually succumbed to the disease.
In one case, the patient insisted to the parents that he knew what his chances were after going through so much in the past years after relapsing. In the final family conference, he insisted on being involved in the decision-making. For some doctors, it would be best to confuse the patient with valuable information by just using medical jargon. At least that way, it would be less painful than having to tell the truth in words he would have understood.
I let the attending do the talking.
It wasn’t easy. But this is not the script.
Your leukemia is in relapse. Your labs are not good. They show a bone marrow that is generating a lot of white blood cells. The fact that you are in relapse and have super high white cells makes the situation very grim. Organ failure will set in, you will bleed, infection will be uncontrollable even before or after chemotherapy. In my mind, I wanted to say, you are dying.
How do you tell a 13-year-old that his time is up and that he was dying?
Good job for a battle well fought.
Spend time with your loved ones at home and provide palliative care.
Death with dignity, quality of life and comfort should be the goal. Emotional and spiritual support should be provided to everyone.
I was surprised that the patient actually wanted to go home. After hearing what needed to be said, he was quick to process this and the parents respected his decision. To die at home.
Then there was the other 13-year-old who had a similar disease and prognosis.
The parents and grandparents were aggressive even when we knew the outcome would be futile. One of the family members is a doctor and was hopeful that the boy would go through this bump in the road. They were all out and hoping that after this episode, they would opt for a bone marrow transplant.
This boy never asked questions.
He was never included in any decision-making process. He never asked as well.
He passed on in the hospital less than a week after being re-admitted.
I pose these two similar scenarios, one where the teen is part of being a decision-maker and the other, where the parents and grandparents are the ones.
Because this is a deeply complex intersection of law, medicine, and ethics, decision-making is collaborative and breaks down into specific roles. The 13-year-old is still considered a minor and while he cannot give consent, he can ASSENT, meaning he can actively agree to or cooperate with the medical plan. Pediatric ethics require clinicians to explain the diagnosis and treatment options in age-appropriate terms and seek the child’s agreement.
There is a difficult road in medicine, and when the time comes that you meet that fork on the road, compassion, care and considering who decides when it is time to let go, must be shared when it can and is appropriate.
As doctors, we can cure sometimes but comfort always.
We are not gods. There is no happy ending in death.
Grief will always stay on as a reminder of our mortality.
