*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.
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What is missing in this article and in most articles I see about advance care planning is a discussion of and understanding of the the duty of health practitioners to get an informed consent before treatment and the rights of patients to not be bound by wishes about future care that too often are expressed before they have a informed understanding of their state of health and what they could expect or possibly anticipate could happen to them.
I have seem many documents recently circulated by the LTC Clinicians Association, by individual health practitioners, even by the Ministry of Health in response to Covid that illustrate the deep rooted misunderstandings about advance care planning and the duties of health practitioners to have discussion in real time with patients or their SDMs if the patient is incapable about the patients real state of health and the possible options,.both those recommended by the health practitioner as well as those treatments that are not being offered because the patient would not benefit from that treatment. these discussions to get decisions must take place even if the patient previously engaged in ACP and expressed wishes about future care. Those acp wishes should not be used to limit discussions or to offer possible treatments even if the patient had express a wish not to have certain treatments before getting full information on their health condition and Actual not speculative treatment options.
Too many practitioners think ACP helps a patient make a decision about future treatment in advance when in fact that is far from the truth or the law or the ethics. Any ACp wishes are not consents or refusals of consent to future treatments. Acp wishes cannot be used directly by clinicians to direct care in real time. Yes the advance discussions discussions are important and need to be done BUT these are not more important than ensuring that a discussion takes place with patients or SDMs in real time when actual decisions need to be made by them with knowledge of the impact of the health problem, and the possible options for treatment with info on the risks, benefits, alternatives to these options and what would likely happen if the patient or SDM refused the treatments offered.
I have reviewed numerous research studies done on advance care planning and sadly most of the studies have ignored what the law on informed consent and health decision making is in the jurisdiction in which the research was done. So the results are skewed because the legal framework was not considered before the research was done.
Numerous health facilities and services of all types use forms .. be it electronic forms or paper – related to ACP and Consent that do not reflect or respect the law on health decision making that has been in Effect in Ontario since 1995. A study I coauthored with two others found that a review of such forms and policies used in 100 health facilities like Ltc homes and hospitals and health services like family practice units contained significant misinformation on health decision making. Not one set of the 100 reviewed were completely legally correct. Common errors related to who was a patients SDM if the patient lacked capacity to make health decisions, how ACP wishes should be treated when actual decisions about treatment needed to be made, how forms like “written advance directives” or “ levels of care” should be used to determine what treatments should be offered ( by the way they should NOT influence what care to offer) , what is the difference between goals of care and informed consent, and so on.
I am now working on commentaries on all the documents I have found as posted by physicians, various health practitioners groups, by the MOHTC on acp and treatments to be offered or not in light of COVID to identify the legal flaws in an effort to try to turn the boat… this major huge ocean liner of misunderstandings about ACP and health decision making to help refocus attention on what is actually required to be done to support both appropriate ACP AND health care decision making that must be done in real time when decisions must be made.
Failure to respect the law on health decision making takes away the rights of patients and their SDMs in health decision making, is the direct opposite of patient focused care, and exposes health practitioners to possible claims of medical malpractice and professional misconduct so it’s not good for any of the players in this process.
In the end all this research and work done on AcP and health decision making has the good intent of ensuring care is patient focused. It has the intent to support patients, SDMs and the health practitioners particularly when difficult discussions and decisions need to be made. But these goals and good intents will not be realized if the basic legal framework on health decision making , much of which has been the law across Canada since the early 1970s and then codified in statutes such as the Health Care Consent Act passed in Ontario in 1996 , continues to be ignored.
This is a terrific article and written with such candid simplicity. It’s a discussion I’ve had a lot over the last years with my family and friends and I finally decided to go ahead this hear and get it all down on paper and talk to the people that need to know my wishes. Oddly, instead of being macabre, it feels kind of peaceful to feel that my wishes are known and that I am sparing people who love me the pain of having to make decisions at a time when they are grieving or scared. I feel it is a very loving thing to do for others and yourself. Thanks so much for writing this article
Susan Greenfield
Thank you Susan! I hope more people will do the same.
The writer indicates that Advance Care Planning is NOT the same as a living will. True, since in Ontario, and I believe in the rest of Canada, “living wills” are not legal documents. People should be looking to their provincial legislation to determine what the requirements are for appointing decision makers (in Ontario a power of attorney for personal care) and how to make wishes known (in Ontario there is no format required, most recent wishes over older, only used if person incapable, substitute decision maker to comply with wishes).
Thank you for tackling this subject. I look forward to hearing about more of these conversations and more education for the general public. I would also like to hear about options for completing MOST and DNR forms if clients are not attached with primary care providers. How can these people be supported in these important conversations more fulsomely?
Hi Cherie,
I think there is a great opportunity to utilize our Telehealth services (OTN in Ontario) to engage in these discussions with primary care physicians. The Ontario Government just approved new fee codes to incentivize this practice. Please contact your primary care provider to setup an OTN call ASAP!