Here’s an uncomfortable subject: end-of-life discussions between those terminally ill (and their families) and the medical professionals entrusted with their care.
Oddly, it’s not usually the patient who has the problem. It’s the rest of us. It seems it’s one thing, talking with the doctors looking after our elderly mothers and fathers as they manage our parents’ COPD or cancer, and then quite another when the emphasis shifts away from attempting to cure those conditions towards making those same patients comfortable as death draws near.
Why the disconnect? We know that patients who have had the opportunity to discuss their EOL care preferences in advance with a doctor are better equipped to manage their options and maintain a sense of not only control, but dignity, too, as the end approaches. Less aggressive care at the end of life is associated with better quality of life near death – a paradox perhaps, but true. Still, there is nothing so painful and unnatural for most of us than that conversation.
It has been established time and time again that these same patients – those who have talked over EOL things with their doctors – consistently choose less invasive treatment measures, preferring to die at home or under hospice care rather than in a hospital. And national guidelines advise physicians to discuss EOL care planning with their cancer patients and others who are expected to live less than 1 year as soon as this timeline is recognized. Still, these conversations are not happening.
Rather than a calm and compassionate exchange a year or more from death, researchers have found that most EOL discussions take place about a month before the end. More than half of these important conversations happen during short-term hospitalizations rather than during more stable periods of routine, outpatient care. The initial EOL discussions most often occur with providers other than oncologists, when death is imminent. According to a new study published in Annual of Internal Medicine, this would suggest ‘that acute medical deterioration, and not the diagnosis of incurable cancer, triggers physicians to talk about EOL care’.
The lateness of these conversations matters. Clearly, doctors and others in the medical world are struggling along with their patients to work towards good outcomes and maintain hope while realistically doing battle with terminal diseases. EOL talks are hard on everyone. But is avoiding them a good idea? Again, it has been consistently shown that when patients don’t plan, they are deprived of a better quality of life. So what can we do to get everyone – patients, caregivers and surrogates, physicians and specialists – on the same page, workings towards the same goal?
Let’s take a look at the whole picture. There is nothing, repeat, nothing, simple or readily predictable about treating the terminally ill. Here are just some of the complications:
- The patient’s age
- The nature of the illness
- The ability of medicine to sustain life
- The emotions families undergo when their loved ones are sick and dying
In an ideal world, by the time of a terminal diagnosis, the patient, the family and other caregivers, and the primary care doctors will have already discussed the available treatment options along with the chances of success, the length and invasiveness of the various treatments, the overall prognosis and the patient’s quality of life during and after treatment. And these discussions would be ongoing, continuing as the patient’s condition changes. Of course, this is not happening nearly as often as it could be.
It is very difficult to navigate the medical world and its options as seriously ill patients near the end of life. It’s even worse should the patient become incapacitated due to that illness and unable to contribute to any decision-making. This leaves everyone guessing, trying to make decisions based on what they think the patient would want – an emotional nightmare for loved ones and very hard for physicians and other healthcare professionals as well.
There is no magic solution here. Advances in medicine and better diagnostic tools mean we know more and we know it sooner, but still, we fall ill, suffer and die. We cannot avoid making hard choices, hard decisions. We can, however, benefit from some good research, research that will give us some no-nonsense, practical guidelines. Let’s not wait for a crisis to force us to plan.
First, some terms we need to know:
- Advance directive: Also known as a living will. These are formal legal documents specifically authorized by state law that allow patients to continue their personal autonomy. They provide instructions for care in case they become incapacitated and unable to make decisions. An advance directive may also be a durable power of attorney.
- Durable power of attorney: Also known as a health care proxy. This document allows a patient to designate a surrogate, the person who will make treatment decisions for the patient should the patient become too incapacitated to make such decisions.
Next up: we will review the why’s and wherefore’s of effective advance care planning. Research shows that while most patients have not participated in advance care planning, many are more than willing to discuss end-of-life care. One of the best ways to get going with this is to discuss hypothetical situations and find out what they would do in the same situation. More tomorrow. And no, this isn’t macabre – it’s life-affirming, what grown-ups are supposed to do.