PROTECTING OR WITHHOLDING?

Mr. W was a 72-year-old man who resided in the long-term care facility because he could no longer take care of himself and his family could not take care of him because of personal and professional obligations. He had a significant medical history of oxygen dependent chronic obstructive pulmonary disease (COPD) secondary to a long history of cigarette smoking. He was awake and alert and could answer any questions related to his health. A year ago he had a chest CT because of his COPD history. Then it showed a density in the upper right lobe. The recommendation was a four month follow-up to assess if there were any changes.

The four month follow-up chest CT was scheduled and the results were similar to the previous showing a density in the upper right lobe. Again it was recommended to get another four month follow-up since Mr. W’s risk for cancer was high because of his smoking history. Mr. W’s health was declining and he was becoming weaker not wanting to get out of bed for meals. When asked how he was feeling he replied he was tired. He never complained of an abnormal cough, chest pain, or shortness of breath. His skin color was dusky and he had large bags under his eyes. His oxygen saturations normally were between 91-93% while on oxygen at 2 liters via nasal cannula. His breathsounds were diminished throughout without adventitious sounds and he had lost 15 pounds in four months.

The follow-up chest CT was done and showed a 4mm mass in his upper right lobe as well as two masses on his liver suggesting metastasis. It also showed enlarged lymph nodes also suspicious for cancer and metastasis. His only daughter lived in Illinois and was listed as the power of attorney (POA). I sat there with the CT results in my hand anticipating the phone call. This would be the phone call nobody wanted to hear and the expected feeling of helplessness living so far away from their loved one. When I contacted her I could tell she was shocked by the news although she told me because of her father’s smoking history it was not a total surprise. I read her the CT results by her request. I gave her the option of hospice and told her the advantages of having them involved for comfort care. Liver cancer can be very painful and having hospice involved could help her father live his last days painfree.  I discussed the option of getting an oncologist’s point of view and for them to give her father any possible options for his type of cancer even though I knew the outcome was not favorable. I knew this was a lot of information that she needed to think about it. I did not expect an answer at that particular time. She agreed and would contact me at a later date.

I contacted her a week later and she told me she had thought about what to do. She told me she did not want anybody to tell her father he had cancer. She felt if he got the news he would become depressed and give up. She also felt going on hospice would also do the same as well as going to an oncologist. Her wishes were she wanted her father comfortable and she wanted to be with him when he started to decline further. I once again discussed hospice and what they could provide them. She told me she did not want her father to know he was dying.

I have to respect the family and their wishes. But I have several questions I wanted to put out there for people to think about. If your family member was coherent and could make their own medical decisions, is it unethical to not tell them they are dying from cancer? Or would you think they probably knew their health was declining and they were dying? Would the POA live with their decision of not telling their father/mother after their death? It is possible once getting the news they could decline faster and give up on life. But is it also possible that if they knew they were dying they would want to do and see things before their death? I have seen the family of the residents in the long-term care facility treat their parents as children and felt they could not make their own decisions because of their age. Do we think they regress because they are aging? Not always, especially in this case. Is not disclosing the diagnosis protecting the resident? Nobody wants to hear they are dying. Or is it withholding medical information that is their right to hear? I did not know these people for years and years and what they might have said thirty years ago. I did not have a personal history with the resident. The daughter did.

Mr. W died in the long-term care facility three months later with his daughter at his side. He was made comfortable in his last hours without hospice. He declined every day after the chest CT and lost an additional 40 pounds. He never knew he died from cancer although I wondered if he had suspicion. I also wondered if he knew something was wrong but nobody told him what. Did he want to know? Would it have made a difference? I will never know.