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 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 of 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 effect 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 as 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.
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 health care 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.
My oncologist appointment here is on Monday and I’ve got a list of questions to ask that have crossed my mind since the first oncologist in Durango diagnosed me in May. I’m still trying to get all these ducks in a row so that I can breath easier knowing my life is in my hands and if it gets too painful, I can choose to leave this world in peace.
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.
More Info & Resources:
Organizations I’m Working With:
Compassion & Choices – The nation’s oldest, largest and most active nonprofit working to improve care and expand options for the end of life.
End of Life Choices: Oregon – Provides personal support and information regarding the Death With Dignity Act and other legal end of life options to Oregonians facing end of life decisions, to the medical community and to the public.
Articles I Found Interesting:
A famous case I remember hearing so much about in 2014 was Brittany Maynard, a 29 year old woman diagnosed with a terminal brain tumor that would kill her in six months:
Death With Dignity Advocate Brittany Maynard Dies in Oregon (NBC News – 11/2/14) – “Brittany chose to make a well thought out and informed choice to Die With Dignity in the face of such a terrible, painful, and incurable illness,” the obituary reads. “She moved to Oregon to pass away in a little yellow house she picked out in the beautiful city of Portland. Oregon is a place that strives to protect patient rights and autonomy; she wished that her home State of California had also been able to provide terminally ill patients with the same choice.
Note: California now does have such a law that took effect June 9, 2016.
What is Medical Aid in Dying? (Compassion and Choices)
Medical aid in dying allows terminally ill adults to request and receive a prescription for medication that they may choose to take to bring about a peaceful death. To qualify, one must be mentally capable, able to self-administer the medication and have a prognosis of six months or less to live. Eight jurisdictions currently authorize medical aid in dying: California, Colorado, Montana, Oregon, Vermont, Washington state, Hawaii and Washington, D.C. Things to consider about this option: For some people, simply having the prescription brings comfort whether or not they use it. This option can be used at home.
Address Inequalities Before Legalizing Assisted Suicide (NY Times – 10/4/12)
In the Netherlands, an overwhelming majority believe euthanasia should be available to suffering patients who want it. By contrast, many Americans — particularly the poor, the disabled, the elderly and members of racial and ethnic minorities — worry that if assisted suicide becomes widely available they will be viewed as “throwaway people.” They fear coercion, stigmatization and discrimination, understandably believing that the societal indifference prevalent throughout their lives will also infect their end-of-life care.
People who are in great pain with terminal illnesses and whose quality of life isn’t much beyond that of caged factory farm animals, deserve to die as they see fit and with a measure of dignity. The reluctance by many Americans to get on board with a legitimate, licensed system with strong, consistent oversight to allow such a medical procedure to be instituted in this country appears to be the result of sincere but misplaced religious views, fear that those who can least afford it will be too easily “put out to pasture” by an uncaring society, or a combination of both. To continue this practice is cruel and unusual punishment as that standard conveys. People forced to deal with excruciating pain to satisfy another person’s moral qualms or some legalistic purview have a right to die with dignity.
Oregon Aid-in-Dying Law Turns 20: Patients Face Hurdles (Statesman Journal – 10/28/17) – Patients have difficulty finding doctors to prescribe the dose of drugs that will put them in a coma and stop their hearts. Willing physicians are few, and they’re especially scarce in rural areas. Even when people find a doctor, the cost of the preferred prescription has increased more than tenfold in recent years, putting the avenue out of reach for people without the means or connections to carry out their wishes.
U.S. Lawmakers Release Documents on Turing, Valeant Drug Price Decisions (CTNews.ca – 2/2/16) – Federal lawmakers have released excerpts from thousands of documents detailing how two drugmakers hiked prices to squeeze more money from some life-saving medicines, a practice that has sparked public outrage. At the centre of the investigation is Turing’s former CEO Martin Shkreli, who became the poster child of pharmaceutical-industry greed last fall for hiking the price of a life-saving drug by more than 5,000 per cent. That drug, Daraprim, is the only approved medication for a parasitic infection which mainly strikes patients with weakened immune systems, including those with cancer and AIDS. The patent on the drug expired decades ago. Shkreli said in an email to one contact: “We raised the price from $1,700 per bottle to $75,000. Should be a very handsome investment for all of us.”