Kirsten’s story: Call the Midwife for Advance Care Planning?

Kirsten Schmidt-Chamberlain was expecting her first child when her midwife brought up Advance Care Planning (ACP) and preparing a will. She learned that every moment is an opportunity to talk about your wishes for healthcare, especially when a big life change (like becoming a parent) is on the horizon. Read on for Kirsten’s reflections on Advance Care Planning for someone who is expecting and steps that all readers can take to protect themselves and their loved ones.

The nastiness of morning sickness had mostly worn off. I could feel my baby stretching and stabbing me in the ribs. The 20-week ultrasound said everything was developing well. The hour-long prenatal appointments with my midwife were filled with information about upcoming tests, options for labour, and statistics about risks. I do not remember any of those details 17 years later. I do, however, remember the hour we spent talking about Advance Care Planning (ACP) and preparing a will. She directly said, “Your first responsibility as a parent is to have your papers in order. Who will speak for you if you can’t? You or your baby’s life may depend on this.”

Who goes to a midwife to plan their death, you ask? Probably no one. Having subsequently trained as a midwife in Ontario myself and practiced in Scarborough, I can tell you I received no training on this topic in midwifery school and have never met another midwife who broaches this subject. But, as a client, it was the most profound conversation we had. That talk set me up for “adulting” in a way I never expected to learn.

Kirsten in her full PPE during the COVID-19 pandemic

Advance Care Planning is defined by Dying With Dignity Canada as a process of thinking about what your values, beliefs, and preferences are, and communicating these in relation to the care you would want in a future situation in which you could not speak for yourself.

You might be thinking — I was going to have a baby! The plan is a lovely home or hospital birth, maybe in the birthing tub… not to be incapacitated or die.

Something that many of us do not think about in Canada, however, is that pregnancy and childbirth can be fatal. Approximately 11 out of 100,000 pregnant people die in childbirth in this country each year. With approximately 385,000 babies born annually, that is around 40 parental deaths. Sometimes pregnant people become incapacitated during or after labour from something planned like a general anesthetic during a C-section, or more unexpected like extreme blood loss. Sometimes radical surgeries and intensive care units are required for the most serious cases. Sometimes both the new parent and baby face health challenges after birth. How will health care providers know what this new parent wants? Who should they turn to about health and personal care decisions for the new parent or baby?

In order to have health and personal care wishes communicated when a person is unable to speak, a Substitute Decision Maker (SDM) or Representative (term varies depending on province) is needed. If you choose to designate someone as your SDM, it is best to do so in writing so they will be recognized (check Dying With Dignity Canada’s toolkits for the laws in your province). This is the person who will speak with the health care providers when the new parent cannot. Dying With Dignity Canada states: “This person should be readily available to speak to healthcare professionals by phone or in person. It should be a role they are ready and willing to take on. They should be able to make tough decisions in a time of crisis. They are also mandated by law to make the decision you would make if you were capable (even if that is different from their own).” They will share what tests, procedures, live saving efforts, end-of-life-care, or post-death plans (e.g. organ donation, who should look after the baby) the new parent would want for themselves or their baby. If you have not designated a SDM, then each province has a hierarchy of SDMs based primarily upon familial relations. For a married couple, it may seem logical that it would be the partner. However, what if the pregnant person is single? In a polyamorous relationship? Does not want their partner to have the stress of making these decisions? Has family only in another country? If there is conflict between members of the family? With no one chosen, a person may be appointed by the courts. Important time may be wasted trying to determine who has the right to make decisions if no one is declared the SDM.

So what should a pregnant person do in this situation? Here are some tips for preparing yourself and your family:

• Explore the resources from Dying With Dignity Canada, including their provincial toolkits to make a plan and appoint your Substitute Decision Maker.
• Talk with your midwife, family physician, or obstetrician about the potential risks in pregnancy and childbirth, what choices are possible for your care, and your wishes. Consider including them as part of your birth plan.
• Provide your health care provider with written direction on who you want to make decisions on your behalf, particularly if they are not who your provincial laws would prescribe to make decisions for you. In this case, DWDC advises you formally name them as a Power of Attorney. Encourage your midwife, family physician, or obstetrician (and everyone else in your life) to learn more about Advance Care Planning.
• Bring the topic up in your prenatal classes, parent groups, and online forums.

Becoming a parent is an amazing journey with tremendous responsibilities. One of the first decisions a parent makes comes before their baby is even born: what will happen if I’m not able to look after this baby and need help myself? Advance care planning during my pregnancy ensured that I had our paperwork in place when my home birth became a c-section; there were no questions by the physician that my partner (female – before the time when same-sex marriage was recognized) would make decisions for me and our child when I could not. Advance care planning brings peace of mind and helps those who need to make tough decisions when things are difficult.

Kirsten and the beautiful baby of one of her clients