Malia’s Miles: Do I have the right to die with dignity?

Malia is a full-time RVer and was recently diagnosed with cancer. She is graciously sharing her journey with us. See her previous post HERE.

by Malia Lane, Malia’s Miles Blog

Who gets to make that decision? And what exactly does “die with dignity” mean? Is there really any such thing as dignity in death? Isn’t it something we’re supposed to fight against with all our might – just to stay alive at any price? Isn’t any quality of life better than death?

I’ve had some passing interest in this subject through the years, but since it’s totally personal to me now since my own terminal cancer diagnosis, I started researching it more carefully. And I’ve found as much controversy and misinformation over this subject as there is about anything else people and politics can find to disagree about.

After being a traveling fulltime RVer for the past 17 years, I recently established my residency in Oregon because of their Death With Dignity Act that gives me that choice. My biggest fear wasn’t death itself, but the pain and loss of all meaningful quality of life as the disease progresses. I’ve seen enough of that process to be terrified at the prospect.

This official state government page provides a lot of information, and I quickly set about following all of the guidelines to qualify. I was thankful to be able to return to an RV park that I knew and loved where I always felt at home. That provided me with an address needed to get my driver’s license, the first requirement to prove residency.

The state’s FAQs detail all requirements, but besides verifiable Oregon residency:

  • You must have a terminal diagnosis with six months or less life expectancy.
  • Two doctors licensed to practice in Oregon must agree on that diagnosis.
  • You must make two formal verbal requests to your doctor for the right to die process. These requests must be at least 15 days apart and must be documented in your chart.
  • You must make a written request to the attending doctor, witnessed by two other people.
  • You may be referred for psychological examination if the doctor feels your judgment is impaired or suffering from a psychological disorder, including depression. (They’re not gonna let you die if you’re suicidal.)
  • You must be cognizant and able to take the medication yourself. Nobody can inject you or put a drink up to your mouth. That’s considered euthanasia (mercy killing) and that’s illegal. (In my opinion, I’d prefer being injected which generally results in instant death instead of having to swallow 100 pills or open the capsules and mix them with liquid and have to drink the foul tasting stuff. From what I understand, that puts you in a coma that could last for hours before you actually die.)

I was under the impression that since Oregon’s law had been effective so long, everyone was on board with it and it wouldn’t be difficult to find doctors who would cooperate once I met the qualifications. I found this is certainly not the case. Some health care systems (like a Catholic hospital or the Veterans Administration) have prohibitions against practicing the Act that physicians must abide by in terms of their employment.

I also found there is no public list of participating doctors. I imagine that’s because of protests against the practice and possible fear of attacks like on abortion clinics or something. I will, therefore, keep the doctors I go to private.

As I read in this article: “The perception seems to be that all you have to do is ask a doctor and you’ll get the medication,” said Mary Burgess, who oversees volunteers in southern Oregon who help patients navigate the process for the nonprofit End of Life Choices Oregon. “That’s not the way it works. Not all doctors want to participate.”

And there is also a difference between a doctor being on board with the concept and actually signing the necessary papers and writing the prescription, not to mention then finding a pharmacy who will fill it.

Pharmacy ripoff
Or: “Your money or you die a prolonged and painful death.”

But the thing that really got me riled up is finding out that the cost of the 20-year-old drug primarily used in this case (Seconal) has skyrocketed from about $300 in 2012 to about $4,000 now! Why?

Valeant, a new business model and now, a new name (APNews – 5/8/18) – “Valeant Pharmaceuticals International Inc. fell into the crosshairs of Washington a couple years ago after an extended acquisition spree of other companies, followed by triple-digit price hikes on critical heart drugs and other medicines. Valeant was one of the companies targeted by lawmakers and consumer rights groups, along with Mylan and Martin Shkreli, a pharmaceutical-industry entrepreneur, who in 2015 raised the price of a drug used to treat AIDS, malaria and cancer patients by more than 5,000 percent. Mylan acquired rights for EpiPen, the life-saving allergy treatment stocked in schools. The cost rocketed beyond $600, an increase of more than 500 percent from 2007 when Mylan bought rights to the drug.”

No wonder they’re changing their name to Bausch Health Companies this month. But they will never erase the stench of their disgusting greed or hypocrisy and it’s this kind of gouging that would be illegal in my book.

So you see I’ve been finding out all kinds of obscure things I never thought I’d need to know. Like the difference between POLST (Physician Order for Life Sustaining Treatment) and a simple Advance Directive. “Emergency medical service (EMS) personnel cannot follow your Advance Directive during an emergency but they can follow a POLST Form. This is because POLST is a medical order. In other words, a POLST Form is a way for your health care professional to tell EMS what treatment to give to you. An Advance Directive is a legal document that does not give orders but tells the healthcare team at the hospital what you generally want/don’t want.”

And I’m still getting all kinds of advice on what other treatments, meds, vitamins, essential oils and other stuff to try to cure the cancer or give me more time. I’m not saying I’m not looking into more options, but I am also determined not to spend the rest of what time I do have left on this earth chasing cures and missing out on what I am capable of doing and enjoying now.

As I just told a Facebook friend who encouraged me not to give up: I understand what you’re saying. I’m not giving up. I still have a hard time believing the diagnosis and especially the time frame. But I am also pragmatic enough to believe it wise to prepare since this is just not something you can do on the spur of the moment.

So even if you disagree with my choices, at least have the compassion and restraint to keep your judgments to yourself.

Love, love, love…. purple-heart-emoji-small

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8 Thoughts to “Malia’s Miles: Do I have the right to die with dignity?”

  1. Jim Wallace

    Malia, just writing about your final journey is dying with dignity. Your presence of mind is a strong attribute to helping people in the same situation. Normally it’s the other way around with the patient receiving guidance from hospice or other medical personnel. And yes the right to die laws that states have can be a very convoluted process. I had no idea that the meds were that expensive. You have a great attitude Malia.

  2. Jim

    My one question is, Why do people who have nothing better to do, have to poke their nose into someone Else’s business and tell them how to run their life? Who do they think they are?
    God bless Dr. Kevorkian, He is a HERO. Instead of prison they should have given the man a Medal.
    Malia, Good luck in your venture, and may God Bless You.

    1. Magee Willis

      Absolutely!

  3. Linda McCormick

    Malia, I have followed your blog for years. I admired your bravery and gumption then for being a woman solo rver, and especially now for your cintinued sharing of your life. Now, at 72, I have sold my house to rv full time. And, it is because of you I found the courage to go for my dream. I applaud you and know I am praying for you. Thank you.

  4. J. Stein

    Acting with informed, intelligent , practical forethought is not “giving up”. Your courage stands as an example for those of us who may face this decision in our own lives. I wish you peace.

  5. Bob Godfrey

    Malia,
    As painful as it is for you to realize your life may be ending soon, I want to thank you for sharing your views and feelings regarding what is happening to your life. Your thoughts & fears and feelings are very helpful and make me realize many things in my own life, but it’s not about me, it’s about you and I thank you again and only wish that there were something I could do to help.

  6. rvgrandma

    As a former Oregonian that voted for the bill giving people choices, it should not be that hard for people choosing to control when their life ends. One reason I voted for it was because I got tired of elderly people being sent to prison when they helped their terminally ill spouse die. But the bill did not address that issue unfortunately but hopefully it has made it easier to walk their spouse/partner through the process.

    Actually, if one gets the right pain meds, my thinking is they just have need to save a pill here and there to get enough to do the job.

    I wish you the best of luck and complete peace in your quest.

    1. Magee Willis

      I think a lot of doctors, in many or all states, without ever supporting right to die with dignity, do this for their patients. Thank God for them.

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