Advance Care Planning
- michelledonaldson9
- 6 days ago
- 4 min read
By Emma McArthur, RN
Advance care planning sounds like a scary concept. It often evokes feelings of fear, which can be so debilitating, people refuse to acknowledge the need for the conversation. Unfortunately, there are only two things you can count on in life; you are born and you will die. Although death can sound like an out-of-control concept, there are some things we can control, like the quality of life in the final years to months leading up to what is, hopefully, a good death. This often comes with difficult conversations around goals of care or advance care planning.
What is quality of life? In a nutshell, it is how a person defines their well-being. This can seem like a simple concept; however, the complexity is that this looks different for everyone. Quality of life is subjective and encompasses everything from physical well-being, to social connections and material needs. It is influenced by beliefs, norms and culture. What one person deems as an acceptable quality of life compared to another can vary vastly. I remember a conversation I was having with a gentleman who was asking me to clarify what quality of life looks like. I told him of a person I had the privilege of communicating with that was on a permanent ventilator. This person was able to communicate with his team that as long as he was able to watch Sunday football and continue to visit with his family he was happy to live as he was. The gentleman I was speaking with looked appalled. “I could never be happy having to stay in a bed so constricted.” For him, this was not a good quality of life.
When you live with a chronic disease such as COPD, lung cancer, or pulmonary fibrosis, these conversations should be had with loved ones. What is important to you? What would make you feel that life wasn’t worthwhile? What makes you happy? If you had to live your days in a nursing home on a ventilator, would that be ok? What if you required a wheelchair for mobility?
Why do you need to have these conversations now? My grandfather had a massive stroke. There was a chance he would recover but he would need a feeding tube, would never walk again, and would have to live out the rest of his days at a nursing home. My grandmother was steadfast in her decision not to pursue active treatment and let him pass. She spoke about how his life was working on his boat and in his workshop and how miserable he would be in a nursing home. “He would never forgive me,” she said. They had had discussions around what was important to them, and when the time came, my grandmother didn’t have to make a difficult decision in a high stress situation; my grandfather made it long before they got there. I want you to think of your loved ones, if you were in a similar situation would they know what you want?
These conversations about quality of life don’t just help your loved ones but also help to guide health care professionals to provide care. In the case of my grandfather, it was clear cut, but it isn’t always so. I worked with someone who was in the last few months of her life and was adamant she wanted to die at home. She did not want to be admitted to the hospital for anything to do with her cancer. However, after discussing with her further, she was willing to go the hospital and be admitted for intravenous antibiotics should she get an infection. She wanted treatment for reversible causes. These nuanced details are important to consider when discussing quality of life, especially at the end of life. Just because you are dying does not mean you cannot have treatment. This is an important distinction to make.
When you are near the end of life, what measures do you want your healthcare team to go to? Do you want them to do “everything” including intubation (putting a tube into your lungs to help you breath) and CPR? Or do you want everything except those things? Would you be okay with short term intubation (ie if doctors think that it could be removed)?
This is a complex discussion and can seem daunting to get going. I have included some helpful materials, including links to worksheets, to help you get started. It is vital to have conversations with your healthcare providers about how certain medical interventions would or would not work for you.
Another consideration is that advance care planning is not a single conversation at one point in time. As things change, you may find that what is important to you changes. You can, at anytime, change your mind. Things change, people change, health changes. All these factors influence how someone wants to live out their days and it is within your right to change with the tides of life and have those decisions reflected in your advance care planning.
Advance Care planning kit – making your personal and medical wishes known
Advance Care planning PEI
Advance Care Planning Kit Nova Scotia Edition
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