My experiences so far...

This is my first post of what will likely be a very long journey.  Over the past 10 years, I have become a fierce advocate for Death With Dignity.  While I am lucky and live in Oregon where we have such a law, it is far more onerous, complicated, and full of bureaucracy and red tape.  And trust me, I know.  Today is the 10th Anniversary of the day we turned my Gramma's pacemaker off so that she could pass on her own terms.  And in July and November of 2020, my Stepmom and Dad, respectively, both diagnosed with late stage cancer, asked for DwD to be coordinated for them.  As you will read in my stories, sometimes this process goes smoothly and is calm.  Sometimes, this process is the bumpiest road full of potholes you can imagine.  I now know more than I ever thought I would about this process, and I have made promises to my now gone family that I will work to make it easier and more straight forward for others to utilize it to end their suffering. No one should have to spend their end of life days on morphine and other drugs and miserable.  They should have a choice. Now, welcome to my world:

My Death With Dignity Experiences.

I've had what I consider the privilege of being asked to help coordinate Death with Dignity three different times in my life since we passed the law in 1997; with my paternal Grandmother in 2011, with my Step(Bonus)Mom in July of 2020, and my Dad in November of 2020. I have long believed that the choice to die should belong to the individual who is faced with any type of terminal situation, so while these were three of the absolute hardest things I’ve ever been asked to do, I agreed to do it from a place of love, respect, and honor.  These were three humans that were part of the guides in my life - My Grandmother was my rock, my Dad was my North Star, and my BonusMom was my silly Crazy Diamond.  I am very sad right now and working through my grief in the right ways for once - taking leave from work, seeing therapists and doctors, taking meds and supplements to help my brain and should recover from some incredibly traumatic grief.   

My Gramma: 

Somewhere around December of 2010, my Gramma decided she was done with her time on this planet.  The five years preceding had taken their toll on her with health issues too numerous to even list.  The pill list was long as my arm, and her world had shrunk to a point where she needed a walker to get from her favorite recliner to the bathroom; and that’s all the further she could go.  I had hired a friend of hers in the Retirement Apartment she lived in to cook for her, and pretty much move in with her, as I had promised Gramma she would never be in an assisted living situation.  

She asked me, my brother, and my dad to come visit on a Sunday afternoon.  I knew what was coming.  My Gramma was the most independent person I’ve ever met in my life.  And if she could control something, by god she did.  When we all got there, she informed us that she was tired.  That she was miserable and just wanted to be done.  I had already promised no more doctor visits or hospitals and we had involved Hospice.  But Gramma and I had talked quite a bit about assisted suicide and she had made her decision.  She told us all and then asked me to go figure it out (I’m that person in our family - the organizer).  

So I set about learning how one signs up for Death with Dignity.  Naively, I thought I just had to talk to a couple docs and get signatures and we’d be ready to do this.  Uhhhh…wrong.  I had forgotten things like the Hippocratic oath; finding doctors who would participate in this wasn’t going to be simple nor easy.  This was the first time that the law on the books made me feel like smacking my forehead into a wall - Death with Dignity felt like Fight Club - you don’t talk about it.  

End of Life Oregon is a great organization that can help get people on the right path and help them understand the mess of overly onerous rules within the Death with Dignity law.  I found them and got excited!  They could help me find participating doctors!  Wrong! They are not allowed to give you names of doctors that participate - per the law.  WHAT?!?! What is one to do?  Was I supposed to put an ad on Craigslist? Start cold calls to Docs in the Legacy System where Gramma was in hospice? Hospice couldn’t help me find docs either.  No one is allowed to.  My head was really starting to hurt.  Partly because of how cranky and grumpy my favorite old woman on the planet was getting every time her ride-or-die granddaughter reported no progress.  Neither of us was happy.  

Then one day in a conversation with one of the folks from Hospice, I learned that pacemakers were considered Hospice Therapy and could be turned off with agreement between Gramma and her Cardiologist. I immediately called and made an appointment with him.  Once I met with the cardiologist and he agreed, we set about making an appt with Boston Scientific, the makers of the pacemaker, as we needed a tech to be present for turning off the pacemaker.  

Gramma got to choose the time and date for the procedure.  It was about 10 days from when we called.  When it was time, my brother and his wife, my dad and his wife, and I all sat with her and then Dad at the direction of the tech, waved a special magnet over the pacemaker and it turned off.   Then we waited.  We knew it could be 2 hours, 29 hours, or a week even before she died.  It would all depend on how her heart reacted to beating on it’s own.  

After 26 hours of hanging out, giving her meds, talking to her until she couldn’t speak any longer, Gramma passed.  In her recliner, in her apartment of 30 years, on her terms, and with her dignity intact.  And her family around her.  

My Bonus Mom: 

Ann was my stepmom, but as we got to know each other and got closer over the 20+ years she and my Dad were together, she became Bonus Mom, and I became her Darling Daughter.  She was a spectacular human.  An artist, a mom, a sister and the wife that helped my Dad become a kinder version of the great guy with rough edges I grew up with.  

The two of them were at home together during Covid Quarantine.  We talked daily about life, government and politics, and how Covid was being handled.  Toward the end of June, Mom hadn’t been been feeling great for a few weeks but had covid test and a few other tests and they really didn’t find anything, so she was just riding it out and waiting to feel better.  Then, on June 24, 2020, things changed…alot.  The day before, she had started to turn yellow, and then her urine became color of coffee.  She told my Dad and he immediately took her to the ER at Good Sam in Portland.  He called me when they arrived to let me know what was going on.  I, of course, thought it was probably a liver problem as all the symptoms so far pointed to that, so I was absolutely in shock when he called me back later in the day to tell me she had pancreatic cancer.  The tumor was lying on the tube from the liver to the kidneys.  

I think I quit hearing him after he said pancreatic cancer.  I knew that was a bad one with not great survival rates.  None of us could go see her for the 10 days she was in the hospital.  That was hell all by itself.  We texted and kept in touch, but I was a happy girl when she finally got to come home as were my Dad and her two sons.  We all hung out at the house and talked to her and hugged on her and helped her get comfy at home.  The next day, I was in talking with her and she mentioned Death with Dignity.  Mom had already decided what she wanted to do.  There would be no biopsies, no chemo or radiation, no surgeries.  She did not want to put herself or any of us through the hell of all of those things with a survival rate that was nearly zero anyway.  She said she had lived a really great life, and that that she wanted to leave now before she got worse.  Over the course of the day, all of us talked about it - Dad, Mom’s sons, her grandsons.  Everyone understood her wishes and said we would honor them. 

As Mom had been with us when Gramma passed, she knew that I had done the legwork then and would know what to do.  So once we had agreement, I sat down and made my plans.  First I called End of Life Oregon and walked through her case with them.  I told them of the doctors I planned to talk with and they agreed with my plan.  (I was smart and used what I learned with Gramma to know I’d have to lobby doctors on my own).  Then I started my calls.  First to her PCP - explained what the situation was and what Mom wanted to do.  Doc agreed to her request and we setup a time for a video call so Mom could ask the doctor in person and confirm that this was her choice per the DwD laws.  Her PCP agreed to be the first doctor that was necessary to sign off per Oregon law.  Then I asked the gastroenterologist that had found the tumor to be the second doctor.  We did another video call and he agreed to be the second signature.  Now we just needed to make a second call fifteen (yes, FIFTEEN) days later.  At that point, I knew there was no way in hell she would live that long and I wanted to get her the approvals as soon as possible.  I had talked with her about how little Pain medication she was taking, and she told me that she wanted to be present for people who can to see her and for her family.  She preferred to be in pain and lucid. I understood, but it both broke my heart and strengthened my resolve.  

After you go through all the preliminary steps to determine if one is eligible for the DwD Act, you then get this funfest of bureaucracy and redtape:

• Q: How does a patient get a prescription from a participating physician?
  A: The patient must meet specific criteria to be able to participate in the DWDA. Then, the following steps must be fulfilled: 
1. The patient must make two oral requests to the attending physician, separated by at least 15 days.
2. The patient must provide a written request to the attending physician, signed in the presence of two witnesses, at least one of whom is not related to the patient.
3. The attending physician and a consulting physician must confirm the patient's diagnosis and prognosis.
4. The attending physician and a consulting physician must determine whether the patient is capable of making and communicating health care decisions for him/herself;
5. If either physician believes the patient's judgment is impaired by a psychiatric or psychological disorder (such as depression), the patient must be referred for a psychological examination;
6. The attending physician must inform the patient of feasible alternatives to the DWDA including comfort care, hospice care, and pain control;
7. The attending physician must request, but may not require, the patient to notify their next-of-kin of the prescription request.
• A patient can rescind a request at any time and in any manner. The attending physician will also offer the patient an opportunity to rescind his/her request at the end of the 15-day waiting period following the initial request to participate.

Once I read that list three times, I finally started to make sense of it and what I still needed to do.  During this time of gathering people and information, I found that starting January 1st, 2020, you could ask for an exemption to the 15-day waiting period.  If the Doctors agreed that she had less than 15 days to live, we could get the prescription and the meds within a few days.  I talked to both docs and they agreed that the exemption should be filed and that they would both support it.  That was on a Tuesday I believe.  Once we knew that was done, the PCP was able to write the prescription that then needed to go to the compounding pharmacy in Tualatin that is the only one around that is licensed by the state to make the mix of meds.  The scrip got couriered to the pharmacy and then they called me to let me know I could come pick it up. 

I left Tualatin headed back for Scappoose and arrived around 5:30.  When I walked in and Mom realized I had the meds, she was ready.  Her grandson had arrived two days prior from Chicago and that was the last person she was waiting for.  Her sons, Grandson, my Dad and I were all there.  We collectively decided on 7pm.  There are two dosing times with these meds.  You start with some meds that help the digestive system ready itself for the meds and relax the patient a bit.  An hour later, she was ready to drink the meds.  We used apple juice to mix into it, but they tell you to put anything that the patient wants to drink in it. 

We all came into the bedroom where she was in bed.  I think we were all still in a bit of shock from the diagnosis 3 short weeks prior, but we all were there and ready to hold her hand and heart and support her decision.  I handed her her the small glass and she drank about 2/3rds of it before she couldn’t drink anymore and handed it back to me.  Within about 2 minutes, she said “I feel like I’m going to pass out”.  She was asleep within 4 minutes and I held her hand and wrist until her pulse became so faint I couldn’t feel it.  Then I tried to check her carotid pulse and there wasn’t one.  I looked up and told my Dad she was gone.  We all quietly left the room and Dad had his last few moments with the love of his life.  

I was proud of my family, of my Bonus Mom’s strength, and of my own strength and ability to walk everyone through all of this.  And of keeping promises to Bonus Mom.  

She got to die with her dignity intact.  The way Gramma did and the way she wanted to.  On her terms at her time.  

I went home that night and collapsed into tears in my partners arms and wailed.  Just wailed.  I had been so strong and been compartmentalizing every emotion, everything that had been going on.  I let it all go and decided to start the healing process. Went the next day to spend some time with my Dad.  I had been so busy with Mom that I didn’t notice the 25 lbs or so Dad had lost.  Or that he wasn’t eating much solid food.  I wrote a lot of his behavior off to grief.  But I’d notice all of it in a few weeks…

My Dad 

Fast forward to October 5th.  My Dad had been dealing with Stenosis in his esophagus for a few years, and his gastro doc would perform an endoscopy and stretch his esophagus every year or so.  It had been bothering him of late and it was time.   I picked him up that morning and drove him to Good Sam.  With Covid, I wasn’t allowed to wait, so I ran home to chill for a bit until I got a call to pick him up.  

The office called to let me know the procedure was done and I could come back, but he also told me that the doctor wanted to talk to Dad and I and that they would be sending him over to the main hospital.  I immediately knew something was very wrong and had a horrid feeling as I headed back to the doctor’s office.  When I got there, the receptionist showed me to a small room and I waited for Dad.  He walked in within moments and sat down next to me.  We looked at each other and both wondered aloud what the hell we were in for.  Within a few minutes, his doc walked in.  He’s a great guy and he and Dad had an awesome relationship and he knew my Dad well.  So he also knew to shoot straight and tell us what was going on.  

As it turns out, the trouble that I didn’t realize Dad had been having swallowing solid food was a mass in his esophagus.  It was big enough that food was not able to pass by it and the doctor had to take a big chunk of food out before he found the tumor.   He wanted to admit Dad to the hospital for a day or two so that they could do a CT Scan and other tests.  So, just over 12 weeks after his wife died, I helped get my Dad admitted to the same hospital she had been in.  Same wing.  Unsettling as hell.  

The Doc had said that he believed it was likely a malignant tumor.  And he was right.  CT Scan showed that and showed lymph nodes elsewhere in his body to be involved as well.  By this point, my brother and I were talking several times a day as he lives in Eastern Oregon and since I was the only person allowed to see him at the hospital, he was staying home until we knew a little more.   We got info fairly quickly, and while initially Dad said he wanted to fight it, as we learned more about survival rates and what he would have to go through, he started to change his mind.  I knew he was scared and I had rarely seen my Dad scared in my life.  I also knew that he had just lost the love of his life and that he needed to work through this and decide what he wanted to do.  I reminded him that whatever he decided, my brother and I would be there to support him, and do whatever he needed.  (Thankfully, I was able to go on leave from my job on October 6th to take care of my Dad.  Yay FMLA and great Employers!) 

A couple days after we got the scan results from the oncologist at the Knight Institute, Dad was having more trouble even eating pudding or broth.  He would either get sick or would only be able to take a few sips at a time - he was quickly losing more weight, energy, and wasn’t comfortable as he was constantly coughing and  and feeling like he would throw up.  It was around then that he told us he wanted to not fight this and asked me to setup whatever calls were necessary to get assisted suicide through the Death with Dignity program approved for him.  

Of course we told him that we would support him.  I told him I would start laying the groundwork for Doctors and approvals.  We had just done this a few months ago, so I took a huge deep breath and started copying my todo list from my Bonus Mom’s end of life to a list for my Dad.  

Once I got that done, I was ready to roll and started making calls and sending emails to Doctors, the End of Life Choices team, and let them know what Dad’s plans were.  I called to ask his Primary Care doctor (who was the same PCP my Bonus Mom had) if she would be the prescribing physician - I was directed to a medical assistant and she relayed messages back and forth between the doctor and I for 2 days.  Which ended with the doctor saying she didn’t want to be the prescribing physician because Dad had seen an Oncologist ad she wanted them to prescribe the meds.  What got lost in the messages back and forth was me trying to explain to the assistant that the Oncologist Dad saw was brand new at Knight and hadn’t taken the proper classes to be able to be the prescribing doctor.  I finally gave up and started talking to his gastro docs and to the End of Life Choices Oregon people again.  

While his gastro doc was more than willing to participate in Dad’s end of life choice, he also hadn’t gotten the training to be able to write the scrip for the suicide meds.  He was the second doc that Dad talked to per the rules however, and said he would do anything he could to help.  Now that I had the second doc on board, I turned my attention back to who the first doc would be.  Dad hadn’t talked to any other doc yet, so we would likely have to do another video call and those were getting tougher by the day.  

My first call was to End of Life Oregon.  There are a couple of their doc who can write the scrips and so I called them to let them know of my trouble with the PCP and asked if they would get me in touch with one of the EOLCOR docs.  While I never got to talk to him, he apparently spoke to the Hospice Social Worker and read Dad’s chart.  From those two things, he decided that my Dad wouldn’t die within fourteen days, and therefore he wouldn’t sign the doc to approve the exemption to the 15-day waiting period.  Really?!?!  He NEVER talked to my Dad.  Or saw him on video.  Or talked to me.  A person’s life is in the balance and you couldn’t be bothered to actually look at and talk to a dying patient?  Who do you work for again? 

Side rant:  Had he seen or talked to him, the Doc would have realized Dad wasn’t able to eat or drink much at all, he had lost 50 lbs. and his thoughts were starting to get a bit fuzzy due to dehydration and lack of nutrition.  (during this time, nutritionists were calling and talking with me about how to get him to eat more - but it was like n/o one told them that he had a tumor that was filling his esophagus.  Maddening to all of us).

I then called back to Knight - finally got one of their other doctors to agree to write the scrip on November 6th.  I called Knight and asked someone (always get a name - ALWAYS) if I could pay to have the scrip couriered to the compounding pharmacy like I had done with my Stepmom’s.  The woman I talked to confirmed that it would be couriered and didn’t think I needed to pay for it.  This all happened around 11-12 in the morning.  So I stayed home in Portland and didn’t go to see Dad right away as I didn’t want to disappoint him again by walking in with no meds and no guarantee of when.   I finally called the pharmacy around 3 to find out the status of the prescription, and that’s when I found that they didn’t even have it yet.  So I called the doctor’s office again.  Finally got to talk to the medical assistant who explained to me that they couriered the prescription to the POST OFFICE.  Which meant at least Monday before meds would be ready.  Which meant at least three more days of absolute misery; throwing up, taking meds that tasted horrid and very little way to make them more palatable as Dad had so much trouble swallowing.  I headed to Scappoose to tell Dad and the family.  We had a long weekend ahead of us.  I made a couple calls to the pharmacy just in case a miracle happened and the scrip arrived.  But with everything else going on in the world and with the USPS, my logical side knew this wasn’t happening until Monday…at least.  So I had a long talk with Dad and let him know I wasn’t going anywhere, nor was my brother, and we would get this figured out so that he didn’t have to be so miserable anymore.  He was at a point where he would talk, but we couldn’t understand most things he said.  He lacked the energy to write as well.  So we rolled our eyes at each other, winked, and got through the best we could.  

Finally, Monday arrived.  And I had every reason to think the scrip would show at the pharmacy that day.  I was feeling positive.  And then when we hadn’t heard anything by 3, I called the pharmacy - mail was in, but no scrip.  I called the doctors office again at Knight to beg for a new prescription.  That’s when they finally admitted the doc that could sign was out on a four day weekend.  Back on Tuesday.  I was feeling frayed, overwhelmed, frustrated, and slightly incompetent (I’m a perfectionist, and my specialty is working through red tape and processes).  And I don’t fail my Dad - never happens.   But I walked into the house again on Monday, and into Dad’s room to the usual “today?” Only to tell him no once again.  He cried.  I cried.  I promised him I’d make this easier for other people to go through.  We were both miserable and unhappy and all the feels.  

Finally, Tuesday morning showed up. November 10.  The doc was back.  And he wrote a prescription that got couriered straight to the pharmacy.  My 29-year old son went to Tualatin to pick up the meds and he brought them straight back to the house.  

We gave Dad the pre-meds that assist in the body absorbing the DwD medication.  An hour later, we were ready.  And then the biggest disappointment of all…he was no longer able to hold the glass and drink the meds on his own.  Through a straw even.  I kept trying to get his attention and get him to hold the glass until my brother stopped me.  

I finally conceded that everything was too late.  There would not be the assisted Death with Dignity that we had for my Gramma and my StepMom.  We were stuck doing this the old-fashioned, miserable, takes who knows how fucking long, painful for everyone, drawn out death that Cancer loves to do to a person.  Ravage every last bit.  We were all devastated.  And my Dad’s breathing rattle just got worse, the coughing more intense, yet hollow.  It got late and everyone went to find couches and sleeping bags to lay down for a bit;  I curled up with my Dad and held him and told him how much I loved him and held his hand.  He couldn’t speak anymore, just tears running down his face and an occasional “I love you” mouthed to me.   I finally fell asleep for a short catnap.  When I awoke, it took me a moment to figure out where I was as it was silent.  I got very confused and then looked over and realized he was gone.  He had passed during my catnap.  I felt like everything inside me just shattered as I made myself get up to go let my brother and the rest of the family know.  It was the hardest thing I’ve ever had to say to anyone - especially myself.  

Usually, third time’s a charm.  Not this time.  But my Dad still maintained his dignity and his “Bob-ness” right up until the end.  And he got to go be with the love of his life.  It just hurt a little more than it needed to.  And took more energy than it should for someone in my Dad’s position to make a personal decision to end his life.  It shouldn’t be so difficult and doesn’t have to be. I promised my Dad that I would work to make things easier for others in his position.  This is my start…I have a lot more to say and will be finding my voice and a platform for it.  I don’t take promises made to my Dad lightly.