While our ultimate death is a certainty, when and how we will die is unknowable. And though death is inevitable, it remains a taboo subject for most. None of us knows what the future will bring. It is better to be prepared, so that if you become unable to make medical care decisions, your designated family members and healthcare providers, if you have talked to them, will have the knowledge and confidence to make those decisions for you.
As long as you are capable of understanding and communicating effectively with your doctor, nurse or other healthcare provider, you will be asked to make your own healthcare treatment decisions. But a serious accident or illness can result in you being incapable of making your own healthcare decisions at the time care is needed. This is why thinking about your preferences and talking to your future decision-makers now is so important. Making an advance care plan is a choice that will help alleviate some of the stress your family and friends could face if they are required to make important decisions for you, including who, exactly, you want your doctor to approach to learn about your wishes.
Advance care planning begins by thinking about your beliefs, values and wishes regarding future healthcare treatment and talking about them with selected family members or friends, as well as your doctor. When people you trust know what is important to you, it will be easier for them to make treatment decisions on your behalf.
Healthcare providers will always offer medically appropriate healthcare based on clinical assessment. They will want to ensure that any symptoms like pain, dizziness, nausea, bleeding or infection are understood and addressed. As long as you can understand and communicate, your healthcare provider will explain the medically appropriate care best for you, including any risks, benefits or alternatives. They will also ask if you have any questions and if you wish to accept or refuse the proposed healthcare treatment.
Some of the hardest decisions deal with the use of life support and life-prolonging medical interventions. These can include a ventilator to help with breathing, tube feeding, kidney dialysis, or CPR to restart the heart and lungs. If you were to have a life-threatening illness or injury, would you want to accept or refuse CPR? All, some, or no life support or life-prolonging medical interventions? A trial period of life support and life-prolonging medical interventions, allowing a natural death to occur if your condition is not improving?
Your advance care plan should at a minimum include these three things:
- Having conversations with selected family members, friends, your family doctor and, if applicable, your spiritual leader, about your beliefs, your values and your wishes.
- Writing down your beliefs, values and wishes for future healthcare treatment.
- Writing down the contact information for the people who qualify to be on your temporary substitute decision-maker list (see below), or, if you prefer, the contact information for the representative you have chosen and named in an enhanced representation agreement, which is the one that allows you to name a person to make personal-care decisions and some healthcare decisions, including decisions to accept or refuse life support or life-prolonging medical interventions for you. (If you choose to have a representative agreement, I recommend you seek legal advice).
Bear in mind that your health and personal circumstances will change over time. As long as you are capable, you may change or cancel your advance care plan at any time and for any reason. Be sure to notify your doctor and your family members/friends of all changes you make.
When thinking about what to cover in your advance care plan, you might want to expressly include your wish to receive palliative care if you are suffering from a serious illness or condition. Palliative care is specialized medical care that focuses on providing patients with relief from the symptoms, pain and stress of a serious illness, whatever the diagnosis. The goal of palliative care is not to prolong life, nor to shorten it. The goal is to improve quality of life for both the patient and the family, and can be provided in a variety of locations, including the patient’s home, in a hospice, in a residential care facility or in a hospital.
Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support. While often associated with end-of-life situations, palliative care is appropriate at any age and at any stage in a serious illness and can be provided alongside other appropriate treatments.
Many people choose to stay at home right to the end of their lives while receiving in-home palliative care from specialized healthcare providers. But if you are in the last few months of your life and feel that you are no longer able to manage at home, a hospice may be a good option for you. Hospices are meant to feel more like a home than a hospital. They are designed and furnished to provide a peaceful, homelike environment for you and your family while you receive end-of-life palliative care.
For more information on the delivery of palliative care in each of these settings, search the B.C. Health Ministry website or contact your local health authority.
Medical assistance in dying
Medical assistance in dying (MAiD) was made legal in Canada in 2016. It provides eligible patients who are experiencing intolerable suffering due to a grievous and incurable medical condition the option to end their life with the assistance of a doctor or nurse practitioner.
If your beliefs and values allow you to consider MAiD in the face of intolerable suffering, you should start by speaking with your doctor or your local health authority. For a variety of reasons, not all doctors will provide MAiD, and no one is required by law to do so. For some, MAiD may conflict with their personal beliefs or professional ethics. However, a patient can expect to be provided with information on how to access this service. Healthcare providers must not discriminate against patients with beliefs or values different from their own, and must provide an effective transfer of care to another healthcare professional who does offer MAiD.
To be eligible for MAiD, a patient must meet all of the following criteria:
- be registered under B.C. Medical Services Plan
- be at least 18 years old and capable of making healthcare decisions
- have made a voluntary request for medical assistance in dying that was not made under any external pressure. This request must be in writing and signed and dated in front of two independent witnesses
- have given informed consent after having been informed of the other means that are available to relieve their suffering, including palliative care, and
- on assessment by two independent doctors or nurse practitioners, are determined to have a grievous and incurable medical condition, which means they have a serious and incurable illness, disease or disability; they are in an advanced state of decline that cannot be reversed; the illness, disease, disability or state of decline causes enduring physical or psychological suffering that is intolerable and cannot be relieved under conditions that the patient considers acceptable; their natural death becomes reasonably foreseeable. (On Feb. 24, 2020, the Liberal government of Canada introduced a bill to further amend the Criminal Code to, among other things related to MAiD, allow eligible persons to pursue a medically assisted death whether their natural death is reasonably foreseeable or not.)
A patient who has requested MAiD must be given the opportunity to withdraw their request throughout the process, including immediately before the medical assistance is administered, and this withdrawal need not be in writing or in any other particular form. Just an indication of a change of mind will do. And be aware that only patients who are themselves capable of giving consent can request MAiD. A request by a substitute decision-maker or by way of an advance directive is not valid.
Start the discussion
There is much more information available on end-of-life options than touched on in this article, and many matters not covered herein, but there is enough here to allow you to begin a conversation with those in your life who you want to make decisions for you when you cannot.
This is a lot to cover in one conversation. You can have as many conversations as you need – just get started before unwelcome circumstances make it too late. You will be doing yourself and your loved ones a big favour.
Tony DuMoulin is a founder of the law firm of DuMoulin Boskovich, where he practised commercial and real estate law for 40 years. He has a long history of involvement in Jewish organizations and municipal projects. DuMoulin is on the executive board of Jewish Seniors Alliance, in whose magazine, Senior Line, this article originally appeared in July 2020, Vol. 27(2).