Local physician develops Plan Well Guide to help with end-of-life care
This website was developed by Dr. Daren Heyland (Lethbridge resident). It shows videos and straight forward instruction how to help our loved ones create their own “Dear Doctor” letter for all the tough medical decisions.
Go to: planwellguide.com
By Bobinec, Greg on March 19, 2019.
Thinking about the end of life isn’t a topic on most people’s minds, but a randomized research study conducted in Lethbridge is getting people talking about their values and how they would like to be treated during their end-of-life care.
Dr. Daren Heyland resides in Lethbridge, but is a critical-care doctor at Kingston General Hospital, professor of medicine and epidemiology at Queen’s University, director of the Clinical Evaluation Research Unit Kingston General Hospital and chair of Canadian researchers at the End of Life Network. From September 2017 until November 2018, Heyland conducted research on 120 random patients around the age of 65, at the Bigelow Fowler Clinic South and Family Medical Clinic to test his Plan Well Guide to help ease the stress of making end-of-life decisions.
“I have been studying research on the end of life for 20 years. It is a passion of mine because as an ICU doctor I am on the receiving end of people who are poorly prepared for serious illness, so I have seen too much suffering in both patients and family members,” says Heyland. “Most people go through life thinking they can do something tomorrow and think that this isn’t relevant to them, but this isn’t about terminal illness. This is about serious illness where there is a probability that you could die, but you could get better, too. You have to plan and think ahead a little bit so if something happens, what is important to you, what your treatment preferences are and how to verbalize it so that the family and doctor won’t be stressed in helping get the care that is right.”
The idea of developing the Plan Well Guide came from his own life experience when his mother-in-law came back from her family doctor with a form, that in his opinion did not meet her values and beliefs for how she should be medically treated. Returning to the doctor with a new form, filled in with the type of care she would like to receive, the family doctor asked for his assistance in developing a formal form for all of his patients.
The Plan Well Guide starts with being prescribed by the doctor for a patient to go online and go through the process of developing the plan. When individuals log into the site they are able to go through easy-to-understand information about the different types of care, serious illness decision making, understanding where their values are and developing the plan. The legal form also has a place for substitute decision maker section for someone to make the best decision for the patient when they are no longer able to communicate.
“One of the things that we are trying to communicate is if you don’t discuss this with your family members, if you were to get seriously ill, they are going to turn to the family members and the doctors are going to engage them on making life-and-death decisions,” says Heyland. “It is extremely stressful for families to try and guesstimate what the patient would have wanted and there is a chance that the patient may not get what they want unless they have expressed those wishes. Sometimes we recover people who would have rather exited life or who are now alive in a health state that is significantly reduced. They are weak and debilitated and if it is an older person who was weak and debilitated to begin, that is not a good outcome and that is what people don’t understand. If you go to ICU from an illness, yes, you could survive but you will survive in a reduced health state.”
The study found most people were willing to do the study, but thought they knew about the different plans, what they wanted and that it was communicated clearly. By the end of the study, participants said they didn’t realize the range of options and the importance of having your personal wishes clearly stated for the doctor and family. Some participants have already made use of the Plan Well Guide and say that losing their loved one wasn’t easy, but having the guide helped with the challenging decisions.
Heyland will be presenting the work of the Lethbridge randomized study at the Advanced Care Planning International Conference in the Netherlands this week to a large audience of researchers and clinicians who are looking for solutions to end-of-life treatment and awareness. Talking about serious illness care and end-of-life decisions is a conversation that is very difficult, but necessary to not only relieve the stress of the patient, but also the family who is left making the final decision. For more about types of care and more about what goes into the plan, visit planwellguide.com.