I Helped My Mom Apply For An Assisted Death Ama

[kbinners]

Hi everyone,

 

I've been thinking about starting this thread for a while.

 

I'm doing it because assisted dying is so newly legal and there are therefore few of us with firsthand knowledge of what it means to patients and families. It's very new, and therefore I think a lot of physicians are afraid of it. If it's an issue that you think you may find yourself involved in, I'd like to offer you my perspective, as merely one person affected.

 

My mom had ALS, which means that under the current assisted-dying law she would probably not have qualified for an assisted death. ALS is considered a chronic condition and it's often difficult to tell when a patient is nearing death because the progression varies wildly from person to person -- this is why it is unlikely that my mom would have been eligible under the current law, even though over 90% of ALS sufferers die within 2-5 years of diagnosis (making it, pretty clearly, a terminal condition).

 

However, between February 6th and June 6th of 2016 there was a legislation vacuum and it was possible for patients to apply for an individual exemption to the previous assisted dying legislation. This is the application I was helping my mother with. It was a lot more involved than applications would be under the current law, at least for those who qualify -- at least I certainly hope so. We started putting together the application in February, and had not yet completed it by April, when my mom passed away in her sleep; depending on the day, I think of this as a blessing or as a tragedy.

 

Notably, my mom was unable to secure the care she sought with the time she had. Therefore I obviously cannot speak to the moment of assisted death itself. What I offer is the experience of a family member who supported a patient's choice to seek an assisted death, the other options that were considered, the impact of legalities and wait-times on patient and caregiver, ethical and emotional challenges, etc.

 

My goal is to keep this intro short, but to give you the opportunity to ask me any questions you might be wondering about regarding patient/family experience and assisted dying. I hope that -- just maybe -- I might be able to encourage more proto-physicians to engage with these questions and to aid your ability to discuss this option with patients and families as it becomes increasingly relevant.

 

I hope a few of you are interested. I hope I can tell you something of use.

 

Kathryn

[Lifeisawesome]

Hi everyone,

 

I've been thinking about starting this thread for a while.

 

I'm doing it because assisted dying is so newly legal and there are therefore few of us with firsthand knowledge of what it means to patients and families. It's very new, and therefore I think a lot of physicians are afraid of it. If it's an issue that you think you may find yourself involved in, I'd like to offer you my perspective, as merely one person affected.

 

My mom had ALS, which means that under the current assisted-dying law she would probably not have qualified for an assisted death. ALS is considered a chronic condition and it's often difficult to tell when a patient is nearing death because the progression varies wildly from person to person -- this is why it is unlikely that my mom would have been eligible under the current law, even though over 90% of ALS sufferers die within 2-5 years of diagnosis (making it, pretty clearly, a terminal condition).

 

However, between February 6th and June 6th of 2016 there was a legislation vacuum and it was possible for patients to apply for an individual exemption to the previous assisted dying legislation. This is the application I was helping my mother with. It was a lot more involved than applications would be under the current law, at least for those who qualify -- at least I certainly hope so. We started putting together the application in February, and had not yet completed it by April, when my mom passed away in her sleep; depending on the day, I think of this as a blessing or as a tragedy.

 

Notably, my mom was unable to secure the care she sought with the time she had. Therefore I obviously cannot speak to the moment of assisted death itself. What I offer is the experience of a family member who supported a patient's choice to seek an assisted death, the other options that were considered, the impact of legalities and wait-times on patient and caregiver, ethical and emotional challenges, etc.

 

My goal is to keep this intro short, but to give you the opportunity to ask me any questions you might be wondering about regarding patient/family experience and assisted dying. I hope that -- just maybe -- I might be able to encourage more proto-physicians to engage with these questions and to aid your ability to discuss this option with patients and families as it becomes increasingly relevant.

 

I hope a few of you are interested. I hope I can tell you something of use.

 

Kathryn

 

Thank you for sharing your story. I'm sure it will be of help, if only for raising the subject and bringing awareness. I'm sorry to hear your mom passed, I can't imagine how difficult that would be to go through.

[kbinners]

Thanks, Lifeisawesome.

 

It was a damn difficult time.

 

Just to clarify -- while the last couple of years have truly been difficult, the hardest parts were watching my mom lose more and more of her abilities, fearing that she would pursue an early death in secret, fearing complications from an unassisted attempt at death, wrestling with the homecare system and jumping through hoops to bring the care team on side, and, obviously, losing my mom --- not being the one to help my mom apply for assistance with her death. (You probably understood this; I just felt I needed to make it explicit.)

 

For some family members, accepting that their loved one wants to die earlier than they might absolutely have to is the hardest part. I know that. However, personally I always understood the fact that my mom wanted some measure of control over her death, and wanted to be able to get out on her own terms before she got to the point of feeling helpless. It's very understandable to me, and I think to many doctors, that patients with degenerative diseases greatly fear the loss of control and autonomy that those conditions come with. If there's one thing I'm proud of about the way I was able to care for my mom it's that I always understood and supported her choice to seek 'an early exit' (which is not to say that was easy to do).

 

Here's something I'd like more people to consider: limiting eligibility to physician-assisted dying does not really limit patients' ability to die 'early'. It does force those who are committed to living life on their own terms to pursue much more desperate options. Those who can afford it spend in the range of $35000 to go to Switzerland, and are unable to say real goodbyes to family and friends because of the need to keep the reason for their flight a secret for fear of the law (it seems possible that Canadian law could stop them at the airport). Those with connections are sometimes able to procure lethal drugs, but anyone who helps them faces 14 years in jail and so these people must act earlier than they would if eligible for assistance and they must act entirely alone. Those without either have the option to stop eating and drinking, which believe it or not is relatively common, or they invent their own ways out.

 

One woman with ALS, Amy Doolittle, wrote a book called Cartwheels about her experience. It ends with a note from her mother explaining that Amy ended her life by smothering herself in the plastic material in which she stored her wedding dress. A doctor, Michael Miller, allowed his own death to be filmed (Dying Wish) when he chose to stop eating and drinking in order to avoid the end stages of cancer. Kim Teske, profiled in the Globe and Mail, also chose to stop eating and drinking to escape from Huntington's. These are just a few examples you can read about. A hospice worker told me that over his years there he'd seen everything from overdoses to patients secreting guns into the facility to end their own lives (this is in Canada, for the record). Regardless of the assisted dying law, patients have the option to end their lives. But the process is so much more difficult for everyone involved.

 

My mom looked at all these options. Before the law changed in February 2016, my mom's plan was to stop eating and drinking. Apparently it's not as bad as it sounds. (But it sounds damn terrible, right?) Supposedly, if a person really doesn't drink anything, their body produces sufficient endorphins to provide effective pain relief. We were lucky that she was supported in this plan by her nurse practitioner and supervising doctor, the homecare provider, and the palliative care team (these were all public employees, not people we hired). We were told that times from the stoppage of eating to death vary wildly depending on the person's circumstances -- in extreme cases the time could be as short as three days or as long as six weeks (note these are very extreme cases). And yet people are choosing this option over the much more prolonged suffering promised by the disease they suffer from. This is the main alternative for people who want, but do not qualify for, assisted death.

 

Really, the whole 'injection at home' option wasn't even at the top of my mom's end-of-life wishlist. She really would have liked the ability to choose her own time and place -- out by a lake, ideally. If a patient has to die decades before their time, why can't we help them plan an exit in a beautiful place they love? (Isn't that, in a way, the least we can do for a terminal patient?) That would have been option number one, followed by an at-home assisted death, followed by the stop-eating route, etc. It's just an image to keep in mind for those of us who may find ourselves voting to determine the CMA's position on whether patients could be allowed to self-administer lethal drugs (in a place of their choice) or whether they require a physician to administer (for example).

 

Thanks for reading.

 

Kathryn

[Wasteman]

Is this one of the reasons why you chose to go into medicine? To play a part in how our society handles assisted dying? Seems darkly noble.  Either way wow, I cannot begin to imagine how hard this whole ordeal must have been for you.  It really is commendable that you also achieved the grades and MCAT scores that you did. If it were me in your shoes, I would have been too distraught do anything, like at all, least of all get into medical school. I never really had a father, so the thought alone of losing my mother like that breaks my heart. At the risk of sounding banal, I'm sorry for you loss and having to go through what you did.

 

Also, thanks for sharing this immensely personal experience with us.

[kbinners]

Hi again Wasteman

 

I made my decision to apply to medicine before my mom was diagnosed. I don't intend to specialize in palliative or geriatrics or anything, but I am aiming for family medicine so I would expect it to be part of what I'd do. In general I'd like to help amplify patient voices & experiences if I can.

 

When my mom was diagnosed I had just moved across the country with my partner. My mom had seen some terrible things happen between sick family members and caregivers, and she insisted that I continue to pursue my goals even though she was sick. It took me while to come to understand this. In the book Cartwheels that I mentioned above, Amy Doolittle talks about her daughter's achievements as she is growing up -- and it helped me finally understand that being able to watch me continue to pursue my goals was worth the sacrifice to the help available to her. I have to say, the day I got my MCAT scores was one of the happiest days we shared in the last year. Interview invites were also something exciting and hopeful we were able to celebrate together. In the end, I also came to understand how hard it is to be a caregiver, the strange things that it does to a relationship, even a close and loving one, and why she wished to avoid those changes as much as possible.

 

I am lucky to have a great dad, but my parents spilt up when I was 4 and I have no siblings, so I grew up alternating between it being just me and dad at one house, and just me and mom at the other. One of the things I've heard people say about what happens when someone is given a serious diagnosis is 'Oh it's amazing what happens -- all these people rally around, and they bring you all kinds of food...' I'd like to note that this doesn't happen for everyone. My mom was very much on her own from when she was diagnosed until I moved to be with her, which was about 2 years after her diagnosis (with the exception of 10-day visits throughout that period, and one 4-month stretch I spent with her). This was really hard for me to accept. It was what my mom seemed to want, in a lot of ways. She was fiercely independent. That said, she really could have used more help. I tried to figure out a way for her to move to BC with us, where the weather is warmer (no snow) and would allow her to get around more easily as she got sicker, and where we could be with her while still doing classes as she wanted -- but even the social worker I talked to basically said 'Well, I wish you luck with that'. It turns out Canada has a systemic problem with inter-provincial moves for sick people. My mom, having been diagnosed with a progressive debilitating disease, was living on disability and in subsidized housing. I was told by the social worker, and found out myself as I tried to make it happen, that it's almost impossible to move someone on social assistance across the country (unless you have an independent source of wealth) because of the waitlists and eligibility requirements for subsidized housing and lack of affordable housing in general. Old and sick people are often on social assistance of one form -- disability, old age pension, welfare -- and so often what happens is that their employed children have to quit work and move provinces in order to care for them, because it's just not possible for the sick person to move without losing their income.

 

The years leading up to my mom's diagnosis were already really hard for her. The great recession caused the business she worked for to fold, and she bounced between contract work and EI for years before finally ending up on welfare. Just months before her diagnosis she had been forced to move to a cheaper place -- in which most of the renters were also on social assistance -- and that was a truly heart-breaking experience. No one deserves to live with the amount of stress, insecurity, and chaos of living in those conditions. After her diagnosis, but before she had been approved for disability assistance (welfare in Ontario is about $600/month; disability up to $1200 if you include the transit allowance and special diet allowance; makes a big difference; allowed her to move, for example), my mom told one of the professionals at the ALS clinic 'To be honest, at this point the poverty is much worse than the disease'. For a number of months, even years, the terminal diagnosis actually improved her quality of life. If you want to know more about how this could have happened, or why I wasn't able to help her more, you can ask me. I know I ask myself all the time. There have been a lot of hard choices over the years. But I'll leave it here for now.

 

Thank you for your kind words. You never know what you'll be able to do until you have to. There has been a lot of heartbreak, it's true. When I first learned about the diagnosis I think I went into shock. My teeth were chattering. But then you have to figure out how to live -- and with diseases like ALS, as they like to remind you, the timeline is massively uncertain. Some people get months, some people get ten years. It adds difficulty to choices like where to live, when/whether/how much to work, etc.

[Bambi]

Kathryn, it is wonderful that you will be a physician with the compassion, understanding and life experience that will be invaluable to your future patients!

[Wasteman]

Hey Kbinners, I know that this might seem off topic, but what're your thoughts on basic income in Canada? I only ask because I feel that your mother would have been the perfect candidate for this type of program, especially when considering what you shared with us.

 

 

Also, excuse me if this comes off as rude, but if not assisted death related matters, how do you plan on helping patients outside of the normal scope of doctor-patient relationships? 

 

Lastly, when your mother said that the diagnosis was better for her, what did she mean by that? Was it that she had better access to social safety net programs or did she mean that she garnered more sympathy and aid from people she would not have otherwise received?

[ukmedstudent]

This is the reason why I'm in this forums premed101. Kathryn thanks for being an inspiration to all of us. You have brought up issues that many of us are uncomfortable talking about.

 

This may seem a little off topic. But I would love to hear your thoughts on this. How do you think physicians should react to their patients who opt for assisted death? I feel that this is a circumstance that is difficult to handle as a physician

[kbinners]

Kathryn, it is wonderful that you will be a physician with the compassion, understanding and life experience that will be invaluable to your future patients!

 

Thank you, Bambi. I hope you are right. One of the things this experience has taught me is that it can be really hard to be actively compassionate, even with the best of intentions. Caregiving is really hard. Despite having tried like heck, I have lots of regrets, especially about my ability to give the level of emotional energy that I wished I could always give... Something to continue to strive for.

[kbinners]

Hi Wasteman,

 

Hey Kbinners, I know that this might seem off topic, but what're your thoughts on basic income in Canada? I only ask because I feel that your mother would have been the perfect candidate for this type of program, especially when considering what you shared with us.

 

Also, excuse me if this comes off as rude, but if not assisted death related matters, how do you plan on helping patients outside of the normal scope of doctor-patient relationships? 

 

Lastly, when your mother said that the diagnosis was better for her, what did she mean by that? Was it that she had better access to social safety net programs or did she mean that she garnered more sympathy and aid from people she would not have otherwise received?

 

I'd love to know more about how basic income might be implemented. In so many ways I think it's a crucial policy. Fighting to stay on welfare often becomes a full time job itself, as recipients have to stay on top of bureaucrats who constantly challenge or arbitrarily cut off all or part of their income. The stress of insecurity, not to mention low incomes and lack of affordable housing, takes real tolls on people's health and ability to thrive. A basic income COULD stop the constant interrogation and threatening of people on social assistance and the bureaucracy required to maintain it, which would be excellent.

 

But I have questions about what it would really look like. What amount would people get? Would it be enough to live on, or would those without additional income still have to apply for a top-up to survive, duplicating the existing bureaucratic model? Would people with disabilities get more, for example, or would the Mincome be enough for them to live on? What impact will it have on wages? If everyone gets a given amount per year from the government, will private employers start to pay workers that amount less? In that case, Mincome could become a government subsidy for private capital, which seems counterproductive.

 

Basically, I don't know enough about the program being proposed to be able to evaluate it. I am, however, super keen to see what happens with the pilot project that the Ontario government has been whispering about it.

 

It's really exciting to hear the idea being discussed seriously by political players in a number of provinces and at multiple levels of government. I hope it continues to show promise as it moves forward.

 

 

Another forum user posted this link ages ago, but it talks about some of the ways that doctors in Canada can help patients outside the scope of traditional medical practice: http://tedxtalks.ted...elp-Me-Prescrib  There are a lot of great initiatives out and about that address some some of the failings of our health and care system as seek to create a better system, on a micro level, with a view to scaling up. A few books I've read that include good examples of innovations that help health systems serve people more effectively include Michael Rachlis' Prescription for Excellence, Atul Gawande's Being Mortal and Paul Farmer's Pathologies of Power. There's also lots of critical analysis and ideas for solutions on Brian Goldman's White Coat Black Art, and a CBC program called Keeping Canada Alive includes some programs that are pushing boundaries in Canada this year.

 

Essentially, I think doctors have the opportunity to listen to the people in their community regarding the biggest challenges to their health, come up with models that might serve those people better (in more or less 'traditional' ways) and use their (comparatively high level) of influence to build better systems. On a small and immediate level it might be 'prescribing income' in the form of a social assistance diet allowance, as described in the TED talk; on a medium level it might be establishing a local program or pilot project (harm reduction program, network of doctors who actively seek out patients not receiving care, innovative clinic); on a high level it might be national or international advocacy and policy-forming (mincome, First Nations rights, generic drugs, etc).

 

 

Regarding my mom's statement that her diagnosis improved her quality of life in some ways: she meant that when she was undiagnosed she was living on welfare ($600/month) in a rooming house, which meant she didn't have enough money to get through the month, she felt stressed and unsafe in her place of residence, and she was socially isolated (you can't go out for coffee if you don't have the money for it, and you can't invite someone over to visit; after diagnosis she was moved to disability funding ($1200/month when you include diet and transit allowances) and could afford to move to a better place, and eat better. She always preferred to keep her illness private when possible, so she didn't mean that she got more sympathy after diagnosis.

[kbinners]

Hi Ukmedstudent,

 

This is the reason why I'm in this forums premed101. Kathryn thanks for being an inspiration to all of us. You have brought up issues that many of us are uncomfortable talking about.

This may seem a little off topic. But I would love to hear your thoughts on this. How do you think physicians should react to their patients who opt for assisted death? I feel that this is a circumstance that is difficult to handle as a physician

 

Thanks for asking. It's obviously a complicated issue and I only have a tiny bit of (anecdotal) experience to bring to the table. That said, as a family member, I would ask that physicians remember that assisted death is now an intervention legally available to patients and they have the right to ask about it and to receive up-to-date information about how the process works and what choices are available to them. My main wish is for doctors to remember that the choice belongs to the patient. Only the patient can judge their own quality of life. I once received some very good advice: answer the first question first. If a patient comes in asking about assisted dying, tell them about assisted dying, how it works, and how you can help them. Once they have been able to access the information they want, they may be more willing to listen to other alternatives that may also be available to them, such as additional supports (home care, longterm care) or palliative care. I think a lot of doctors will have the initial reaction of shrinking from assisted dying as an option, and automatically trying to convince patients to try another other option. I suspect that will cause a lot of patients to feel unsupported or judged. That's not to say a doctor shouldn't help a patient look at other possibilities -- but the first thing has to be a willingness to support whatever they decide is right for their own body, and taking the time to listen to the patient's description of their life and reasons for their inquiry.

 

Something I'd like to see is a real effort to avoid the duplication of inquiry into the patient's reasons for seeking an assisted death. Surely only one or maybe two professionals need interview the patient about the sensitive reasons they are seeking this intervention. My mom and I found that she was constantly having to justify her choices to many different people, and that process was exhausting for her. (The different people included, but were not limited to, over 6 PSWs, their four supervisors, a PT, two OTs, two palliative care specialists, a psychiatrist, a nurse practitioner, a family doctor, a social worker, and a representative from the ALS society.) The system needs to be coordinated better. Someone needs to step up and make sure that coordination happens for any given patient -- in our case, sometimes the nurse practitioner took on that job, sometimes a home care supervisor, sometimes the case coordinator, but all of them were able to work to ensure less reduplication when they set out to do so.

 

I really feel that there are a lot of parallels between the new legislation on assisted dying and the initial legalization of abortion. Both are interventions that have a major, and irreversible, impact on the patient. In both cases, the patient needs to be supported and empowered in their decision-making, because they are facing a very difficult choice. Women seeking an abortion used to have to justify their decision in front of a panel of experts, and could be denied access. They were faced with stigma and judgement and pushed to consider other alternatives. I believe that women today face much less judgement and pressure from their doctors regarding abortion. Physicians (on the whole) recognize that the patient has a difficult decision to make and that each option has its consequences and benefits for her. I hope that care providers will begin to change their reticence regarding assisted dying into an attitude more similar to that regarding abortion -- that it is an intervention that is therapeutic in the right circumstances, and that those circumstances are best determined by an informed and empowered patient.

 

I hope that begins to address your question. Feel free to ask for clarification or let me know if there was something you wondered about that I didn't think to discuss.