Study after study after study, and the conclusions are all the same: patients – and their families – who have discussed advance care planning and directives with their doctors well ahead of any medical crisis or emergency hospital stay are happier and calmer. Their lives are better, period. When they have openly discussed their preferences with their loved ones, they
- had less anxiety and fear
- believed that their doctors and caregivers had a clear understanding of their wishes
- felt strongly they had more ability to influence, control and direct their medical care
- indicated a greater understanding and comfort level than they had before the talks
Caregivers and surrogates, too, are far more comfortable in their roles when they have had the chance to go over the contents of any advance care directives with the patients. They are more confident in their ability to correctly predict patient preferences. In short, they feel better about the whole thing.
So the patients themselves are far happier when end-of-life discussions are held openly and calmly, well ahead of time. Doctors find that the conversations enhance the relationships with both the patients and the patients’ caregivers and families. And the families themselves, once the initial discomfort is addressed, have more peace of mind and confidence, knowing they are honoring a patient’s true desires. Everybody gets to be heard, differences are reconciled and, should the need arise, doctors and families have had a chance to come to agreement should they need to make decisions for the patient some time in the future.
The theory, it seems, is just fine. The actual mechanics, apparently, are still a problem. How do we get these conversations started?
The best research indicates that physicians should conduct advance care planning discussions with the appropriate patients during routine outpatient visits. Those patients with very serious illnesses and chronic conditions, especially those over 65, are ready. Being hospitalized for a serious or progressive illness presents another good opportunity to start the conversation. And patients themselves often hint that they are interested, offering cues to their families and doctors: they express a desire to die, talk about someone they know in a similar situation or start asking about hospice care. Facing difficult treatments, those with poor outcomes, or a change in prognosis, can also trigger the talks. Again, since predicting actual death is very difficult, providers need to step up and speak up, while there is still time for constructive planning.
What’s all this hesitation about? It’s about denial, obviously, but also about a culture that avoids responsibility and any hint of discomfort with all its might. Doctors are concerned that patients will lose faith in them if they talk about death. So often – perhaps too often – death means failure. Doctors do not like to fail, nor are they trained to fail. Round and round it goes: doctors do whatever they can to keep a patient alive, waiting for someone else to make the end-of-life decisions; patients come to feel no one is paying any attention to them as people, only as patients; and family members and loved ones have no idea what to do. The 500-lb gorilla is not only in the room, it has the remote and it’s ordering pizza and nachos.
Let’s deal with that gorilla, shall we? Death is a normal part of life, and goodness knows, life is about so much more than simply not being dead. We honor nothing by insisting we have all the answers on one hand and refusing to plan for any unknowns on the other.
Give those who are ill or suffering the chance to be heard, the chance to tell their stories their own way. Talk to them, hear their fears, address their worries. Find out what they want and why, how they feel about treatments, what they know about their condition. Studies show patients have a preference for hypothetical situations. There are treatments they will accept as being better than death and there are treatments they will refuse, treatments for conditions they consider worse than death. And as a prognosis becomes less and less positive, their choices change. Few patients want complicated, invasive treatments when they have a terminal illness, but if there’s a chance to recover from a stroke or a coma, they will go for it. If they will be cognitively intact once the treatment is over, that’s fine. But if they are to be impaired afterwards, or in a persistent vegetative state, they most often refuse that treatment. There comes a time when enough is enough. We should know these things about each other.
What do we see here? These discussions are about life, not death. Death may be inevitable for us all, but right now, today, there’s life. Let patients – let us all – live it with as much safety and autonomy and peace as possible. Remember, MRIs and IVs and all the monitors and machines in the world are just part of the story. The ethics, the values, the heart and soul, that’s the rest of the story, our part of the story, from start to finish, and in between, too. Again, life is so very much more than simply not being dead.