Palliative Life

Our Patients Should Demand This of Us, Even When it Hurts.

By Maura J Lipp, MD

One of the hardest things we do as physicians is deliver bad news. Getting it right is critical. This seems like an obvious statement, but there is more to it than what is apparent on the surface. While we’re most assuredly not going to remember every conversation, the recipient however will remember every syllable that we utter. Because for that individual, that moment will be one of the most profound of their existence. It doesn’t matter that I’m tired from the four other family meetings I’ve had that afternoon, or that I have a laundry list of tasks yet to accomplish. To the people I am conversing with, it is imperative they feel as if they have my absolute best. What we say and how we say it can alter their illness experience from that point forward. In addition, the ability to grieve appropriately starts with that conversation. Our words will affect a family’s memory of the event for years to come, long after their loved one has passed. It is quite a weight to bear indeed.  

Ironically, this subject is one of the LEAST covered during our training. I personally can recall only one day throughout the entirety of my education devoted to this. ONE DAY! Thankfully, it seems that paradigm is shifting for the better, however I fear we are still way off the mark. Some doctors are innately good at it while others are not. Those who are not can learn to be better of course, but they will always have a degree of discomfort as it isn’t part of their natural skill set.  

The one day of training I did have was particularly good, fortunately. My residency program hired professional patients aka actors and gave us several scenarios to follow. I was asked to tell one gentleman, who had been cheating on his wife, that he had contracted HIV. I was also asked to give a new diagnosis of advanced lung cancer and uncover elder abuse, among others. The most helpful element of the training: we were filmed doing this and sent home with our tape (yes VHS, it was THAT long ago). We were able to watch ourselves and see all the cringe worthy moments. There is no faster way to learn than to witness your delivery in action. Body language is key. It was quite revealing.  

Initiation by Fire

I recall the first time I ever had to disclose terrible news, it was during my intern year. I was a brand-new intern, in fact I believe it was still July. I was on call covering at night and a patient from another team had passed away. This death was a surprise, it wasn’t someone who was expected to pass. I was asked by my resident to call his wife and tell her the shocking news. After my resident ordered me to do it, she walked away without giving me any instruction. I was left standing there, looking at the phone thinking how am I going to be able to call this woman whom I’ve never met, wake her up and tell her that her husband was dead. I think or rather I hope I managed to pull it off okay. I’ll never forget that feeling however, I was so nervous and awkward. THAT was my introduction to breaking bad news. I had to figure it out on my own. I often wondered if my resident asked me to do it because she herself was uncomfortable. I’d bet that so many of my fellow physicians had a similar beginning.  

If you conducted a poll of healthcare providers asking, “how do you deliver bad news well?” I’d bet a sizeable percentage won’t be able to verbalize an answer. We all know what a bad delivery looks like, that is what NOT to do. Simply because we’ve often witnessed this in our careers. But knowing what TO do is a harder question to answer. Perhaps because of the lack of formal training but also because some elements are of the intangible kind. The parts of us that come from the heart.  

When we are committed to honesty, we help reduce the level of misunderstanding, doubt and fear throughout society.

14th Dalai Lama

I would say, one of the most essential elements in this equation is honesty. Which also happens to be the part many people struggle with. Not because physicians are evil liars, quite the contrary. But it’s because when the truth is terrible, honesty hurts. It hurts both the doctor and the patient. It’s the part that we feel so uncomfortable with because we know we are about to break someone’s heart. News that will completely overturn their lives. The natural human instinct is to try to minimize the pain with a less than full disclosure. Even though we are not responsible for said news, being the bearer of it feels equally as awful. It’s that much harder when we have had a long-standing relationship with a particular patient. It is devastating to watch the reaction of those on the receiving end. But you can’t have trust without honesty. A doctor-patient relationship without trust is an ineffective one.  

Uncertainty also works against us. It can be tempting to answer the question “how long am I going to live?” with a simple “well no one could tell you that.” In many ways, giving such an answer is one of our defense mechanisms. Sure, that’s an easier “out” but it doesn’t help that patient at all. It isn’t wrong mind you, none of us can predict the EXACT time of someone’s death. Prognosticating itself is filled with difficulty and despite what one may think, as physicians we are terrible at it. Studies suggest, using our clinical experience alone we are about as accurate as flipping a coin. Not to say that our clinical acumen should be discounted, of course not. Our patients however deserve more than just our “best guesses.” Hence the reason objective evidenced based tools for prognosticating are so important. Our patients deserve an answer, the best estimate we can give them with a full explanation behind it. Sure, the disclaimer indicating we don’t of course have a crystal ball can be attached to our prediction. But patients living with a serious illness need information. Their vision of what the future will likely hold needs to approximate ours.  

In my career I’ve had too many difficult conversations to count. As an intensivist, these conversations are usually terrible and involve the end-of-life. The thing I’ve been thanked for the most however was honesty. No matter how bad the news, I’ve always been told the honesty was appreciated. We all may fear the damage our reporting will do, but in fact we will do more harm by “sugar coating it.” The intentions may be honorable, but the negative consequences are many. Families in the ICU are being asked to make life-altering decisions. They cannot do this without absolute knowledge of the situation, something that requires complete honesty on our part. 

Honesty is the first chapter in the book of wisdom.

Thomas Jefferson

I once had a patient in the ICU, while she was intubated and sedated, her husband had been murdered. When she awakened and was extubated, she began asking for her phone to call him. I had to go and tell her the bad news. Unfortunately, she was still encephalopathic and her short-term memory was impaired, more than any of us had realized. She had repeatedly forgotten the news I told her. I had to re-disclose it as if it had been the first time and I witnessed the same emotional response every time. This was awful. I had been dreading telling her initially and once I finally got up the courage to do so, I felt relieved. Only to find out, I needed to go back and do it again and again. That was a grueling day.

Honesty Provides Options

If a patient believes they have several more years to live when in fact, it’s more likely 6 months, by not telling them we are depriving them of the chance to live the best life they can while they are still on the earth. Thinking they still have a couple of years for example, one may delay checking a box on their “bucket list.” Perhaps one of their important goals is to be able to walk their daughter down the aisle. If the wedding isn’t for another year and we do not fully disclose the truth, we will deprive them of that opportunity. In knowing, they have the power to change the wedding date to a closer one. If Christmas is someone’s favorite holiday, knowing allows them to celebrate it early. Knowledge is power and in the case of life-limiting illness, it’s everything.  

I was once asked by a patient “should I divorce my husband and move closer to the rest of my family?” This was a woman who was referred to me for a “non-resolving pneumonia” which in fact turned out to be lung cancer. At first, I thought, why are you asking me I know nothing of your relationship? Even if I did, I am your doctor it’s not my place to say. But I also quickly understood that the real question she was asking was “am I going to die soon and if so, should I focus on nothing but what will make me happy for the remainder of my days?” She wasn’t happy in her marriage at all. In truth, her cancer was very advanced. My answer was honest: If what she was really asking was about prognosis and if I think she should live her best life because her time was limited, then the answer is yes. About 2 weeks later, she made an impromptu visit to my office. She wanted to give me a hug, thank me and say goodbye. She had decided to leave her husband and move to another state to be closer to her family. She appeared so happy, strangely so. She knew she was dying but she was at peace, looking forward to a final chapter on her terms. If I hadn’t answered her question, she may not have made such a decision. One that was something she needed to do to live her best life.  

Honesty promotes openness, empowers us, and enables us to develop consistency in how we present the facts.

Unknown

When I say honesty, I mean disclosing the information fully to the best of our ability within the margins of our expertise. Honesty is of course, only part of a broader strategy for delivering bad news. This includes ensuring the disclosure is compassionate and sensitive and, in a manner consistent with the beliefs of that individual. We have an expression in Palliative Care, “meet people where they are.” Which means, we don’t force patients to adhere to our agenda on our timeline instead we adhere to theirs. If a patient doesn’t want to hear the actual word “cancer” you can still disclose information by using the word “illness” for example. If the explanation is right, they will know what you mean even without saying the word. It’s on us as professionals to work around such things. I have found that some providers are afraid to do that, believing that if we don’t use the word “cancer” then we are deficient in our accuracy. Such providers insist on forcing patients to hear the word as if that’s the only way to get the message across. In doing so, the therapeutic relationship is damaged. This must be a two-way street.  

Our responsibility as providers goes beyond just ensuring a proper diagnosis and treatment. It includes caring for the human in front of us and the lives they lead. Our actions and decisions affect them completely. The illness experience isn’t only about symptoms. It’s about how that disease affects their lives, emotionally, physically, financially, and existentially. The things we communicate must respect and acknowledge that. 

Now that I am a person living with Stage 4 cancer, I understand this more than ever. I still remember the words “I’m sorry to have to tell you this, but you have evidence of widely metastatic disease.” These words could not have been more unexpected. I was at work when the phone call came. I had been ill for less than 2 weeks. In an instant, my entire world changed. EVERY SINGLE THING. I was left in that moment, thinking about how I was going to go home and break this news to my husband of fifteen years. No matter how many incredibly difficult conversations I’ve had throughout my career, nothing could have prepared me for the one I now faced.  

There are so many terrible things about cancer. To me one of the worst is operating in a world of complete uncertainty. It’s impossible to make decisions, any decisions when you don’t know what’s coming next. Without information, one simply can’t function. It’s paralyzing. I know my physicians don’t have a crystal ball, but I am beyond desperate for information, anything that helps me navigate. A world of absolute uncertainty is terrible. I live and die by honest answers these days. To someone like me, there is nothing more vital.