We doctors know more about mortality than most people; we think about it constantly. But when it comes time to prepare our patients for what lies ahead, we often seem unable to discuss the inevitable journey to death.
As a palliative care physician with 15 years of experience, I see how the absence of information about the natural progression of life-limiting illnesses can cause patients and families significant and unnecessary suffering. I have sat at the bedside of thousands of dying patients who were still in the dark about the realities of their disease.
But looking backward in the patient’s story, the problem is often illuminated. At the time of diagnosis, many doctors neglect to broker an open dialogue with their patients about the certainties of progressive illness. This begins a pattern of communication based on half-truths, implied consequences, unspoken questions, and ill-addressed fears. Consequently, patients and their families are making many important decisions about treatments, work, and family life, with only partial information. When they finally realize death is approaching, they often feel disappointed by their health-care providers and filled with regrets. One puzzled patient said to me, “Why the hell didn’t anyone tell me this was going to happen?”
The “natural history” of an illness is a description of how it behaves from diagnosis until the end, and is otherwise known as the “general illness pattern.” For many life-limiting progressive chronic illnesses such as heart failure, chronic lung disease, ALS, dementia, and non-curable cancers, these patterns are well understood by doctors. For example, a patient diagnosed with ALS will typically have a prognosis of two to five years, with their condition declining rather predictably as the disease progresses. Yet, surprisingly, many doctors shy away from revisiting this important contextual information throughout the illness, perhaps because they worry that the patient doesn’t want to know, or would be saddened, or become hopeless and depressed. Then, in the busyness of care the big picture blurs for both clinician and patient. The focus is on treatment options, procedures, investigations, and acute issues. The storyline is lost. And so is the patient.
Recently I was asked to see Anne who, five years ago, was diagnosed with non-curable cancer. She had been discharged from hospital after six weeks of treatment for complications from her disease. I met her upstairs in her bedroom. She was emaciated, jaundiced, and weak. Her condition had been deteriorating since her return home. Immediately, I knew she was dying. But she didn’t. In fact, Anne was hoping to receive another round of chemotherapy. Her oncologist had seen her in the hospital and told her that, although she couldn’t get more chemo currently, if she became stronger and could eat more, perhaps he would reconsider. He booked her a follow-up appointment in two weeks’ time. He knew that in all likelihood she would only get weaker. He knew that she was probably past the tipping point. However, he had failed to break the difficult news of Anne’s decline months earlier, even prior to her recent hospitalization. He sent her home with unrealistic hope that she could improve.
Anne asked me, “Why am I not getting stronger? If I don’t make it to the appointment next week, how will I get more chemotherapy?” Her worried husband, Frank asked, “How am I even supposed to get her down the stairs, into the car, and to the cancer centre in this condition?” They were obviously very distressed.
I asked permission to speak openly without sugar-coating the situation. They held hands as I gently untangled the puzzle for them, including my estimation that Anne would die in the next few weeks. Frank lowered his head and leaned closer to Anne. They understood.
Frank approached me before I walked out the door. Teary-eyed, he said, “I’m so grateful that finally someone has been honest with us. We’ve had false hopes for months. I guess now we can refocus on how we spend our time.”
I left Anne and Frank feeling weary and angry. Driving to the next patient’s home, I knew I would likely have a similar discussion. Early in my career, I assumed that my role as a palliative care physician was to provide comfort to dying patients. I didn’t realize that it included demystifying the natural history of an illness, too often at the 11th hour of a patient’s journey. I didn’t expect it to include trying to make up for months and even years of misinformation. I am in the frustrating position of doing the work of other doctors who had difficulty having an honest conversation with their patients when their patients needed them to.
I’m not suggesting, by any means, that everyone who is diagnosed with a progressive life-limiting illness be told from the very beginning that they will eventually die. However, patients do have the right to understand the “big picture” of their diagnosis long before they are days from their death. This could help them maintain a sense of control over their situation and put future decisions in perspective. Every doctor must be able to “walk two roads” with their patients from the start, balancing the more immediate demands of the illness with where it is likely to lead eventually. This requires a nimbleness that isn’t easy but is nevertheless essential in order to prepare patients for the advanced and terminal phases of their illnesses. Morphine is not a reasonable substitute for truth-telling.
For health care providers, planners, administrators, ministries, policy makers and economists, one of the answers to our health care crisis may be as simple as rethinking how we cultivate a culture of more realistic and honest communication. It isn’t fair that patients and their families travel blindfolded along their journey, especially when doctors often know what the general path will look like. Patients have a fundamental right to this roadmap.