How would you like to die?.... Seems like a bit of an odd question to ask. But it is one of the most important questions we should ask ourselves.
Today is National Advance Care Planning(ACP) Day; A day that, as the name suggests, involves making a care plan for yourself in advance, specifically in regards to your end of life care. It involves sharing with your loved ones your values, hopes and wishes, as they relate to your health care.
The topic of death or end of life is a matter that many do not want to discuss, especially if feeling relatively healthy, as they may not see the need for such discussion. When you are healthy, however, is exactly the time to start the conversation about your end of life care. You want to start such conversations when you are still in a position to be able to express your views regarding your health care. Waiting until you are ill however may limit, or even eliminate, your ability to express how you want to be cared for, thus leaving your loved ones having to determine and guess what you may have wanted.
It is a fact of life, as soon as we enter this world, that we each will eventually pass away. Knowing this fact of life, why not plan ahead in order to ensure that you will be cared for in the way which you would prefer.
Now how does one even get started with advance care planning, you may ask ? What exactly is involved? As difficult as these conversations may be, you can engage in the process in as simple as 5 steps. Watch the video below to see how:
( For a more detailed guide See- A Guide To Advance Care Planning)
Even after watching this video and reading this article, you may still wonder, what impact does it make whether I engage in advance care planning(ACP) or not. Below are two real-life examples which illustrate a scenario involving ACP and another without having ACP. You can determine which scenario would be best for you and your loved ones.
Example A: No Advance Care Planning Mr. Smith is a 90 year old male with multiple medical conditions, who was informed by his physician that based on his health, he may pass away within the coming year. Shortly after receiving such information, Mr. Smith unfortunately suffered a massive stroke and was admitted to hospital. The impact of Mr. Smith's stroke, in combination with his other health issues, is that he is no longer able to take care of himself. He is not able to engage in conversation or get up to walk, or even go to the washroom on his own. Another outcome of his stroke is that Mr Smith is no longer able to swallow (without a significant risk of causing more harm) and is unable to eat or drink enough on his own to stay alive. As such, while in hospital Mr Smith was given a temporary feeding tube, which would provide him with a form of nutrition for his body. This tube however was only a temporary measure. A decision would need to be made whether to permanently insert a feeding tube(in Mr.Smith's stomach) to prolong his life, or to not insert the tube, allowing Mr. Smith to eat/drink by mouth with the discussed risks (including a likely sooner death).
As a result of the stroke Mr. Smith is no longer able to make decisions on his own behalf. Mr. Smith is a widower, but has two children, David and Sarah. Mr Smith did not appoint a legal decision maker, meaning both children would need to make his health care decisions together. Physicians inform Mr. Smith's children that without the permanent feeding tube Mr. Smith would not be able to get enough nutrition to sustain life. Physicians also inform Mr. Smith's children,however, that inserting the feeding tube likely would not make any improvement to his ability to care for himself or to engage with others. Physicians also discussed risks associated with the feeding tube, particularly for Mr. Smith given his various other health conditions.
Mr. Smith had never spoken with his children about what his values and wishes would be in regards to his future care, leaving his children with having to make such a decision for him without actually knowing his wishes.
Mr Smith son's David believes a permanent feeding tube should not be inserted, as based on physician reports Mr. Smith would not improve and because of the risks associated with having the feeding tube.
Mr. Smith's daughter Sarah however believes the permanent feeding tube should be inserted, as if they did not they would be "starving" their father to death and would be "killing him".
As there was no appointed decision maker, no discussion of Mr. Smith's wishes to inform his children in decision making, and Mr. Smith's children do not agree, conflict ensues within the family, prolonging a decision regarding care (which at times can cause greater harm). Now not only are Mr. Smith's children stressed about the state of their father, they also are stressed, angry and frustrated in attempting to make a decision on his behalf.
Example B: Advance Care Planning Mrs. Black has bladder cancer and was informed by her physician that she could pass away within the next 1-2 years depending on how her illness progressed. Mrs. Black, knowing her diagnosis, began having conversations with her family members and health care team about how she would want to be cared for in the future. She discussed her high regard for wanting to have a high quality of life ,where she would be able to engage and enjoy spending time with family and friends, and participating in her favourite activities such as playing bridge and reading books. She expressed not wanting to be dependent on others for her basic needs, or to suffer in pain or discomfort. Mrs Black also appointed her daughter Anna to be her decision maker.
Over the course of the year Mrs Black's cancer had progressed further and spread to other organs. Due to her pain Mrs. Black was admitted to hospital. While in hospital Mrs. Black's condition continues to worsen. She is no longer able to take care of herself. Mrs. Black is now unable to walk and spends her days in bed. She is often in pain and is dependent on others to bath her, dress her and clean her when she urinates or has a bowel movement. She rarely wants to eat or drink. In hospital Mrs. Black could be provided with intravenous(IV) hydration, which could help her sustain life due to her lack of eating/drinking. A decision will need to be made. The IV may help extend her life for a short period of time, but would not help improve her over all condition. Without the IV, however, Mrs. Black likely could pass away within a few days or a week. At this time, Mrs. Black is unable to express her wishes or make a decision on her own behalf.
Mrs. Black's daughter, Anna, is her decision maker. Anna is distressed and saddened by the current circumstances and the condition of her mother, however she is confident in knowing the decision her mother would want to make, based on discussions the year prior. Despite feeling overwhelmed and distraught over the soon passing of her mother, Anna did not have worry or concern over making a decision regarding her mother's care. Anna informed physicians that her mother would not want the IV, as her current state was not the quality of life she expressed she wanted to live. Anna expressed that her mother had made clear in previous discussions that she would not want to prolong her passing if living such a poor quality of life and in such discomfort and pain.
Despite the hurt and grief Anna experiences in dealing with the passing of her mother, Anna did not have to cope with the added stress of being uncertain about what decision to make about her mother's care, as Mrs. Black had engaged in Advance Care Planning and made clear what her wishes were to her family.
So.....How would you like to die?
Ask the question! Start the conversation!
It is one of the most important conversations you will have during your life !
Share this information with others and encourage your loved ones to start the conversation about end of life care.