What you don’t know, but your doctor does
The machines in my patient’s hospital room whirred away, compensating for her heart, lung, and kidney failure. She had grown so dependent on the machines that when her husband eventually requested she be disconnected from them, she died within minutes.
Her cancer was so advanced that it had infiltrated almost every organ of her body over the past several years. She had grown steadily more debilitated; there was not an ounce of fat on her body, she had no energy, she was in constant pain—and yet neither she nor her husband had any idea she was dying.
When it comes to seriously ill patients, data show that loved ones often have very different ideas of the patient’s prognosis than physicians do. In one study, 93% of family members believed the patient would be alive in one year, 71% believed they would be living independently, and 83% thought the patient would have good quality of life.
But the physicians thought very differently. Only 43% expected the patient would be alive at a year, while 6% believed the patient would be living independently. And only 4% thought the patient would have a good quality of life.[i]
The discrepancy is worrying.
But here’s the good news. You can do something about this. You can set the stage for honest communication with the healthcare team. This way, you will be empowered to live the life you want right up until the final moments.
So how can you do this? Here are 5 strategies that can help.
1) Accept Death. While death is hard to face for most of us—we are biologically driven to stay alive—it is something we will all someday experience. In order for us to enter this period with our eyes open, and a modicum of control, we need to accept that we will die. Meditate, pray, write, talk, see a therapist—do whatever you need to do to come to some internal peace with this fact.
2) Prepare for Death. It is vital that you prepare in advance to ensure that you receive the care that is most aligned with your preferences and values. For example, if you are a highly social person, would you be willing to live on a breathing machine, where communication would be a major challenge? Once you’ve identified your preferences around these issues, communicate them to your loved ones. I encourage you to ask them for their preferences in return. This exchange of information will decrease the chance that you will end up feeling powerless at the bedside of your loved one, as I have witnessed many times.
3) Invite the truth from the medical team. Do you want to know what the doctors and nurses are really thinking? Or would you prefer to just hear good news? Encourage your doctor to share her thoughts honestly. If a physician thinks you can’t handle it or don’t want it, she will be less likely to speak difficult truths. One study in the Journal of the American Medical Association[ii] showed that patients and families rated doctors higher on a likability scale when they provided optimistic rather than pessimistic prognoses. And everyone, including doctors, wants to be liked.
4) Be able to tolerate uncertainty. No one—not you, not your doctor—likes uncertainty. Especially when it comes to life and death decisions. But with serious illness, perfect certainty of outcome is almost impossible until the very end. And so doctors often hold back their concerns until they’re more sure. But this can rob you of some options you might want. For example, temporary breathing tubes, which can cause damage to the throat after 2 weeks, are often automatically replaced by more permanent tubes sewn into the neck at the Adams’ Apple. Yet many would not accept this more invasive attachment to a machine if they understood the doctor thought it would likely be permanent. Experienced doctors almost always have a sense of the trajectory of the illness, even if they aren’t telling you. If you are interested in what your doctor is thinking, you may need to say up front, “I understand you might not be sure, but what is your sense of things?” This will encourage your physician to give you information that might prove invaluable to you.
5) Take your place at the decision-making table. You belong there, even if you haven’t been specifically invited. The doctor may be the expert on the disease, but the patient and family are the expert on the patient. Advocate, ask questions, and volunteer information about the things that matter to you or your loved one.
All of this can take courage. But it is well worth the effort to follow these five steps. My hope is that ultimately all of us are empowered to pursue the paths of our choice, right up until our final moments.
ICHAS are currently taking applicants for a Masters programme in Counselling & Pastoral Care. For further information please contact the college.