Conversations

The most important part of the world of all of healthcare, but especially in the world of elder care, or care of people with serious or chronic illness is an ongoing conversation. The conversation needs to be honest and realistic. I understand the flowery talk needed at times when someone hears bad news, a terrifying diagnosis. The words cancer, dementia, Parkinson’s disease, advanced cardiac disease, advanced lung disease are beyond terrifying, unchartered, and evokes panic in anyone who hears them. I do believe in hope, the only thing we can cling to during an unspeakably devastating moment. I have been the one who delivers bad news on many occasions. The fear is palpable. I am the first to offer hope in those moments, after all, none of us can possibly have all the answers and you truly never know what can happen. That is why the people in the medical field need to take special care in what we say to patients. I think giving a semblance of hope is essential. This is something I learned long ago from a wise Clinical Nurse Specialist when I was in my 20’s railing against the “lies” oncologists told their patients that they would be fine when all I saw was the “poison” we administered to prevent what I felt was the inevitable, a long and painful death. This wise woman set me straight and helped me to realize that hope is truly the only thing any of us have in moments of fear and tragedy. I am grateful for this advice I was given over 30 years ago.

That being said, I also believe that it is very important to tell patients the truth. I am somewhat known for telling things like they are. Somehow, that has been appealing to the majority of the people I have cared for over the years. I like to give options and alternative scenarios, but I tell the truth. I am, at times, brutally honest, in a gentle and compassionate way.

I will give a specific example. I recently cared for a man with advanced cancer. He was continuing with his treatments, but had a significant weight loss over the last few months, was profoundly short of breath requiring oxygen, had no energy, no appetite, was incredibly weak, sleeping most of the day. This man was depressed, frustrated, angry, sad, fearful, and incredibly fragile. He wanted to live desperately. His family equally championed his “fight” “Dad is not going to give up”.

I sat down with this man and his spouse and had a very honest conversation. I asked them about what they thought was happening and where all of this was going. They both, when asked a realistic question, answered just as honestly. “I’m not doing well, I don’t think I have much longer”. Most people, when asked this question will give a true answer. The problem is, no one ever asks the question. Once that question and answer is out there, the shields come down. Tears are shed, regrets and sadness are honestly expressed. What an amazing gift to be a part of that profound moment! And believe it or not, the patient and family are relieved. Finally, they can express the thoughts they had been keeping bottled up for months or maybe even years.

These types of conversations are a lot easier if the health care provider has established a relationship with the patient. Oncologists, pulmonologists, cardiologists, neurologists, primary care providers are in the best position to have these conversations as an ongoing discussion. Having discussions with the people in whom we entrust our health is paramount to having our goals of care fulfilled.

Sadly, most providers and most patients are uncomfortable with this type of honest and intense conversation. Doctors, NP’s, PA’s don’t like talking about the possibility of not being able to “save someone” because in the minds of health care providers, that means failure. Patients and families don’t like the conversation because our culture teaches us that we can “ fix” everything and “giving up” is a weakness. No one likes to face a loved one’s death nor does anyone like to face their own mortality.

Death being a part of life has become taboo, yet it is the ultimate reality. None of us will make it out of this life alive. Death, for me, is a new beginning. I am endlessly grateful for my faith that there is an eternal life waiting for us. This faith is what allows to me to be honest and forthright with my patients.

Have conversations with your loved ones, with your providers. My fellow providers, don’t be afraid to talk about the reality right in front of us. Our patients suffer when we don’t talk about the elephant in the room. Offer hope, but have these important conversations and be honest!!!!