Film can start “The Conversation” about end-of-life

I wrote this column which was published in my local newspaper, The Nugget on 12/10/2014, after viewing the beautiful, award-winning documentary “Final Pose,” about a local yoga teacher who developed cancer and in the end decided to use Oregon’s Death with Dignity Act.

I attended the screening of “Final Pose,” an award-winning BendFilm 2014 documentary directed by Karen Mellberg of Bend at The Belfry last week. The film concerns the end-of-life journey of Sisters yogi Myra Lani Fisher through her own voice and was filmed during the last few weeks of her life as she was preparing to use Oregon’s Death with Dignity (DWD) Act.

I didn’t know Myra and only learned about her a few weeks before she transitioned. I wish I could have had a conversation with this very strong woman to learn how she processed her decision to choose this end of life option. Because this is what I do– help people have these conversations about death and dying so they can make informed choices, have discussions among their family members, and fill out the necessary paperwork so their last wishes will be carried out. It probably wouldn’t surprise you that most people find it difficult to even contemplate their own death, much less plan for it.

I spoke with a number of people that night who had no idea this information was available or even that Oregon has had a DWD law since 1997. Very few have talked to their doctor about anything to do with their own death and not many knew about the process one has to go through to request the option. This can be a daunting task for anyone, especially for those who wait until the last possible minute to even try to find information. Just having to make the request twice 15 days apart, much less trying to find a physician who will write a prescription and a pharmacist who will fill it, can take time and perseverance– this where CompassionandChoices.org can help.

It’s certainly not a fit for everybody as one’s dying process isn’t always a terrible ordeal, but for some people, it is… with some diseases, especially certain cancers such as Lani suffered with, it can be excruciatingly painful in spite of the availability of morphine through hospice services. Certainly palliative pain management is helpful for a lot of people, but it’s not universally available, not everybody benefits equally and an individual’s suffering is intangible.

For those who die slowly over a long period of time, especially in their 80s and 90s, continuing to be kept alive only to continue suffering even without pain can be unbearable to some and these patients often beg to die, beg their loved ones to kill them; some take matters into their own hands.

Voluntary Stop Eating and Drinking (VSED) is often the only sanctioned option a person has if they are not terminal (diagnosed with 6 months or less to live), have a degenerative disease or mental problem or are frail elderly. I’ve seen VSED go well for some people and others not so much. We don’t have a perfect system for helping people to die well yet. Medical students are finally starting to receive some training in end of life care and things are slowly beginning to change. Insurance coverage is a whole other issue.

Those who end up in hospitals trying one more resuscitation, one more invasive procedure, one more experimental treatment, often end up on life support beyond what they would have wanted– just because they were too afraid to have the conversation and make some informed decisions about what treatments they would want and not want at the end of their lives. This agony extends to the family and leaves them traumatized for years over whether they did the right thing because they always thought there would be more time and suddenly there is none.

Yes, there are religious objections, and fears of wantonly offing the disabled, the elderly, the vulnerable who are unable to speak for themselves, which is why we need solid laws to prevent coercion and forced extermination. Seventeen years of experience has shown the Oregon DWD Act to be effective and only used by a small percentage of people. And only a small percentage of the people who request their prescription actually fill it, and an even smaller percentage actually end up taking it.

The recent case of Brittany Maynard, a 29-year old woman with incurable brain cancer, a prognosis of a only a few months to live, and the likelihood of an agonizing dying process, has kickstarted the conversation around the country about our right to choose to die on our own terms. She moved to Oregon from California where there is no legal option for aid-in-dying and ended her life last month with the help of Compassion & Choices by self-administering the medication on the day she chose at home in her own bed with her husband and her mother by her side. Isn’t this the way we all want to go?

So now we have this beautiful documentary, a gift from Myra Lani Fisher and Karen Mellberg, about the beauty of life in our own death to give each of us the courage to have those hard conversations we don’t want to have with ourselves or with our families, but which we must… because suddenly there may be no more time.

The boundaries that divide Life and Death are at best shadowy and vague.

Who shall say where the one ends and where the other begins?

~Edgar Allen Poe

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A Peaceful Death with Dignity

I’d like to express my appreciation to Brittany Maynard for going public with her decision to exercise her Death with Dignity option in Oregon because it will bring this conversation to the family dinner table where it belongs. Of course I’m sad she has this terrible condition, but if she can make something positive out of a bad situation, which she is by raising awareness, it gives hope to many people who want the same thing– if my death is inevitable, let it be peaceful and on my own terms.

This is what I encourage people to do on a daily basis through my writings and “Having The Conversation over Coffee and Cake” gatherings. I don’t encourage Death with Dignity, but I’m not afraid to address it as an option and provide resources, such as Compassion & Choices, if people want to consider it. This is a truly personal decision that should be between a terminally ill patient and those in his or her inner circle and it’s a shame the Maynard family has to be exposed to the vitriol that permeates Internet over their personal decision to allow Brittany to have a peaceful death with dignity. It’s as if  everybody suddenly noticed there’s an elephant in the room.

Those among us who think we have a right to an opinion about how any person decides he or she wants his/her death to be should be thinking about how they want the end of their lives to be, not someone they don’t even know. If, for whatever reason you think, having control over one’s own death at the end of life, is wrong then do it your way, whatever that is – and let me do it my way. Don’t force your views on me because you think you have all the right answers and I won’t interfere with your decisions about how you choose to experience your last days. And I’m referring here to people who have been given 6 months or less to survive a terminal illness, are in intractable pain or unbearable agony or suffering, and choose not to prolong their life.

That choice is still limited by the ability to self-administer the medication and therein lies the crux of the problem. If the person waits too long and loses decision-making abilities, or there is a sudden change in health that precludes swallowing or self-administering the medication, or if the person makes the request too late for all the paperwork to be completed, there are complications. This is where the law comes in. We can’t have people recklessly giving vulnerable people life-ending medications, or physicians or insurance companies or the government deciding when life no longer has value.

The law that was passed in Oregon takes into account the legal aspects of the issue to the extent that we can protect the vulnerable and protect physicians, hospice workers, pharmacists and families, from prosecution for helping a dying person carry out their wishes for a peaceful ending to their physical existence. This law has stood the test of time with no slippery slope or mass extinction for 17 years and is the basis for the laws passed in Washington, Vermont, and pending a vote in several other states.

Studies among physicians reveal a majority of physicians would refuse treatment and consider Death with Dignity for themselves, but they would suggest continuing treatments to their patients. They have the hypocrisy to claim that an oath written 2500 years ago by people who believed the earth was flat, and gods and goddesses ruled over humanity, told them to do no harm and give no poison. What really is the harm if the person is dying and is in considerable pain?

Which leads us to consider religious views that claim God said this or that, or a Jesus or a Mohammed said this or that, and believe that their holy book or their dogma is the one and only truth – and that it applies to the rest of us. And many people don’t believe… that there is even a God or a Jesus or a Mohammed to have a say so in the matter. Then we have many ethical atheists who think we only have one life and have no right to end it on our own terms.

We live in a world where millions of people die every day, often sick, hungry, dehydrated, neglected or savagely beaten, enslaved, decapitated, electrocuted, eviscerated, drowned, bombed, burned alive, as if they were meaningless cockroaches. But suddenly we become concerned and know what’s best for some poor person who has been suffering terribly with some dreadful disease or condition, and only asks for a peaceful death with dignity in the privacy of their own bedrooms, surrounded by their loved ones.

I hope Brittany Maynard’s plight will be an awakening to all you who have doubts about what is the right thing to for you in a situation like she is facing and begin to see that death is a sacred journey into whatever comes next. We will all go through it, we need to recognize that it is a graduation, not the end of our journey.

The message from my near-death experience is that We Don’t Die! Death of the body is not the end of life – life goes on and there is so much more to look forward to beyond the veil of illusion.

Peace & Joy!

Diane

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