*Editor’s note: Coronavirus will result in many unplanned hospitalizations and put unprecedented pressure on our limited hospital resources. People older than 60 are more vulnerable to severe infection. Knowing this, we urge you to have an advanced care planning discussion with your family members. Triaging of ICU resources may become an unfortunate reality in Canada if we can’t flatten the curve in time. We bumped up this piece, originally scheduled to be posted on Advanced Care Planning Day (April 16, 2020), to help spread this message now.
What if you knew that you or a loved one had only five years to live? What would you do differently? What conversations would you have? As a general internist and palliative care physician, I am privileged to have conversations with my patients about what makes their life worth living and their future goals when they are facing death. Many of them, and their families, say that they waited too long to have these conversations and that they wish they had had them much sooner.
Current medical technologies can keep the human body ‘alive’ for prolonged periods of time. Families are often faced with difficult and painful decisions about when to let a loved one die. In some cases, patients may have a disease where death may be very unpredictable, making the decision about when to forgo life-prolonging therapies even more challenging. Too often, the journey toward death resembles a drawn-out period of suffering, marked by dramatic health crises related to an underlying chronic disease.
In many instances, my patients and their loved ones have not had a frank discussion about the types of care they would want in critical situations, including the use of cardiopulmonary resuscitation (CPR) and invasive therapies like mechanical ventilation. As a result, they are left with uncertainty and distress about deciding on the best path to follow when faced with these decisions in a moment of crisis.
There are many reasons why people avoid having these discussions: they are awkward, uncomfortable, and nobody (including the patient and physician) likes to talk about potential death. But sometimes it is because of a lack of recognition that a person is dying from their illness(es). We don’t know when the right time is for patients and physicians to have these critically important discussions.
Prognosticating, or predicting, when someone might die is very challenging, and some predictive scores require a substantial amount of clinical data that may not be readily available at the time a decision needs to be made.
But what many people may not realize is that the simple fact that they needed to be hospitalized for any reason can indicate that they may die in the near future. My colleagues and I recently published a study in the Canadian Medical Association Journal that looked at the risk of death in nearly 1 million adults in Ontario over the age of 65. We studied older adults who had not previously been hospitalized or visited the emergency department within the last 5 years. We then determined the number of people who died within 5 years of being hospitalized.
To our surprise, in people who had an “unplanned” emergency hospitalization (i.e. they became unexpectedly unwell and needed urgent admission to hospital), nearly 40% died within 5 years of being hospitalized. Nearly half of these people died within the first year.
Our findings tell us that unplanned hospitalization may not be recognized as an event that signifies an increased risk of death, but it should be. Unplanned hospitalization should trigger important discussions between a patient, their family and caregivers, and their healthcare providers about whether they wish to get CPR or receive mechanical ventilation on future visits.
Clarifying these preferences is paramount as CPR can be traumatic, uncomfortable and of little benefit in many older adults with serious illness. In some instances, it simply prolongs suffering.
So, what should you do with this information? It starts with having an Advance Care Planning (ACP) discussion. ACP is a process of thinking about, and then talking about the things you value most in your life, the goals you wish to achieve during the remainder of your life, and the things that make life worth living. It is important to discuss this with the person whom you would want to make those decisions for you if you were unable. Ideally, these conversations should happen in the outpatient setting (i.e. not in hospital during a moment of crisis), with healthcare providers who know you well.
Some patients tell me their goals are to maintain their independence and to spend meaningful time with their family and loved ones. They tell me they prefer to focus on being comfortable, even if that means their life is shorter as a result. Finally, they identify who in their life they wish to be making decisions for them if they are unable to.
An ACP is not the same as a living will. Its main purpose is to identify your goals, who your decision-maker is and help to prepare them to make decisions on your behalf.
Unfortunately, most people don’t appear to be having advanced care planning conversations. In Canada, 30 to 40 per cent of older adults still have not talked about what kind of care they would want should they become seriously ill.
This is why campaigns like The Speak Up campaign are so important in starting the process of creating an ACP. The Canadian Society of Palliative Care Physicians stress the importance of ACP discussions by including it on their Choosing Wisely list of “Five Things Physicians and Patients Should Question: Palliative Care.” Why? When people have these discussions, they are more likely to receive and be satisfied with specific medical treatment they receive – or don’t receive – near the end of life. Their family members also have significantly less stress, anxiety, and depression about the experience of their loved one’s death.
Thinking about and talking about dying is difficult. And putting family members in the position to make decisions for you with no guidance is even more difficult.
But talking about the things that we value in life with our loved ones can be easy. And if documented in the right way, it can help your family and healthcare providers know what to do if you become critically ill.
It’s knowing when the right time is to have these discussions that pose the biggest challenge. But if you or a loved one is admitted to hospital, now is the time to Speak Up. Only you can ensure your voice is heard and that you die on your own terms.