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Doc, Please Tell It To Me Straight

Author : Maricruz Ferrari LCSW

I was asked to provide support with a family in the oncology unit. The team on the case tried to get me up to speed so I could have a better understanding of the patient’s health and family’s position before meeting them. I walked into the patient’s room with the knowledge that the patient was actively dying and it was a matter of days before her last breath. The oncologist was offering a palliative treatment that had slim to no chance of helping. The team insisted the husband had a poor understanding of the patient’s condition and was insisting on treatment. I was expected to reiterate the patient’s condition and determine if he would be agreeable to hospice care.

I approached the hospital bed and witnessed a scene that has unfortunately become too familiar in my work setting. It was clearly visible the patient was struggling; her pulse and oxygenation were dropping. She had stopped eating and was spending most of her time sleeping. Her pain was requiring constant medication management to keep it a bay. Her husband, an older gentleman, sat next to her exhausted, but in a protective manner. I introduced myself and asked how he was feeling. He expressed frustration stating his wife seemed to be getting increasingly weaker, and no treatment was being provided to help her recover. My brain paused for a second. How could he be so disconnected from reality when the picture in front of his eyes was so telling? I asked him to tell me what he understood was happening to the patient. He understood the patient was “very sick”, but he was waiting for the physician to do something to help her recover. Oh lord, we were way past the point of recovery, we had already arrived at the point where only comfort care was possible.

I asked this nice gentleman to leave the room with me so we could speak freely. We sat down in front of a computer, and we reviewed the doctor’s notes together. I clarified in a comprehensive way that no curative treatment was being done because it was no longer appropriate. Her cancer was so advanced that any attempt for palliative chemotherapy would’ve most likely hurt her and sped up her death. I told him that this was the time to keep her comfortable and to have family come to be with her. The gentleman kept quiet throughout most of the encounter, just asking for further information a few times. After I had nothing else to explain, he stood up, expressed gratitude and told me, “I’m taking her home, that’s where she’s always wanted to die.” I was so perplexed with his reaction since 30 minutes earlier he was asking for treatment. I told him we would make all the necessary arrangements so she could transition home with hospice in the next few hours. He seemed pleased. I asked him if he had any last questions. That’s when I understood this family was the victim of a common mistake made with many patients. He said, “ I wish the doctor would’ve told me straight from the beginning how sick she was, I wouldn't have been wasting her family time here.” Dagger to the heart. It truly hurts me every time the wishes of a dying person are not respected due to lack of communication.

I have worked with physicians for many years. Most of them have genuine intentions to serve and improve the health of their patients. Many are kind, dedicated and caring. However, many too, have a tough time discussing end of life with patients. It seems discussing treatments, cures and alternatives come more natural to them. Physicians get countless hours of training in all aspects of medicine, but very little training in interpersonal relationships and family discussions. People assume that the communication of difficult news comes naturally to physicians, but that is not necessarily the case. In my years of practice, I have met numerous families that don’t have a clear picture of the patient’s conditions or if they do, their doctor has not discussed end of life decisions (even when it is clear the patient is heading that way). You see, physicians are only human and their humanity often gets in the way.

What can you do about it? Be your best advocate. Always ask your physician to tell you things in a straightforward manner. If you don’t understand something, ask again. When it comes to your health or the health of your loved ones, you want to have a clear understanding of what’s going on and what to expect. The more information you have, the better decisions you’ll make for you and those you love. Don’t follow someone’s lead blindly, you have the right to know the status of the situation and plan. I’m sure you don’t want to waste your time, resources and emotions just for lack of information. Therefore, ask questions, demand clear information and advocate for yourself.

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Maricruz Ferrari is a Licensed Clinical Social Worker who has worked in healthcare for multiple years. During the most recent stage in her career, she has provided supportive services to people on the end of life journey. Along the way she has learned there is a significant unawareness in the community about end of life choices. It is often people go through intensively difficult medical experiences due to lack of knowledge. Maricruz wants to create more awareness over end of life issues and choices with the purpose of helping people be more prepared for the last chapter in their physical.

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Tags:   end of life, death, social work, hospice, Clinical Social Worker, healthcare, life choices, medical choice, end of life care, end of life care options, end of life care hospice, end of life planning, end of life planning, end of life decisions, living will, communication, doctors, questions, explanations, plain speaking

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Submitted : 2019-02-06    Word Count : 828    Times Viewed: 52