Grief Week 2: Dying with Dignity
When I was in college one of my dear friends did her research and presentation speech on euthanasia, which was a deep topic back in 1990. I will be honest, I didn’t really know what it was or understand it’s importance until I realized my grandmother, who suffered from ovarian cancer for over two years, could have been able to have a better quality of death than what she went through in her last few months in 1988. Fast forward to 2020 and there are still only a handful of states who have a Die with Dignity law or a physician-assisted dying or aid-in-dying law to help those who are terminally ill be able to make their end-of-life decisions and determine how they wish to die.
These laws may sound morbid and ominous, but in truth, they are meant to assist the mentally competent adult, who has less than 6 months to live, voluntarily request and receive a prescription medication to assist their inevitable and imminent death. These laws, in essence, give patients dignity, control and peace of mind during their final days with family and loved ones. The protections in each law statutes ensure that the patient remains the driving force in their end-of-life care discussions.
In the past decade I have had too many of my friends and family members go through excruciating cancer treatments only to receive the news that they were terminal. Each one of them had so much life and vigor in them and they knew there were not going to make it, but had to endure the endless and unbearable last few months of having their cancer take them. It was agonizing watching them struggle as well as watching their families struggle with their care as well as their own emotions and health. The sad part, each one lived in a state that does not have a death with dignity law. Now, I am going through this same process with my mom.
My mom is ready to go. She has made peace with life, love and doesn’t have any regrets. She has lived an amazing life and is one of the bravest people I know. Ten years ago she survived a stroke where they found a hole in her heart. She then survived stage 4 breast cancer and a mastectomy and for seven years she was cancer free. Her breast cancer came back in December 2019 and in May 2020 they discovered that her heart had a valve that didn’t want to participate. The only way they could fix it was to do open heart surgery and neither of her doctors thought she would survive the surgery and recovery from such a hard procedure. She chose hospice and her family has been by her side ever since. As much as I didn’t like her choice, I respected it as I knew she was tired of the fight and I knew she put in a long, hard fight. I also knew, she didn’t have another choice. I am grateful that we were given this time together and cherish these weeks with my family so much.
Do you know what is the most insufferable for me personally? Giving her a hug every morning and having her look at me and say, with a deep sigh and tears in her eyes, “I made it through another night… I’m tired of making it through another night.” Our family has been with her for the past month waiting and watching. The heart will give out before the cancer ever takes her. Her heart is beating anywhere from 120-140 BPM (A normal resting heart rate for adults ranges from 60 to 100 beats per minute.) Basically, she is running a marathon all day long, every single day. Her quality of life has diminished as well as her energy and mind. She still knows us and is still able to eat on her own, but it is getting harder and harder each day. Each night I hug her and remind her that she can keep on sleeping and she says, “I’m trying to do just that.” She is so ready to go. She has made peace with passing and moving on and waits "patiently" for her heart to give out. It just keeps on ticking and she becomes more and more mad and anxious.
Not to mention the wear and tear it is taking on my amazing dad. I took the night shift for him the other night and nearly sobbed at what is needed to help her. She needs to shift her body every 1.5 hours in order to breathe so she lays in bed and then needs to get up. Sometimes it is more comfortable for her to sit in her recliner chair so he has to help her into her wheelchair, give her the meds she needs to calm her anxiety and then take her to the living room. She may be there and okay for 2 hours, then she needs to move again and my dad is back up helping her. My fear is that his health will decline trying to make sure she is okay and where she needs. I don't need both parents going at the same time. I live in Colorado and we have a law to help our residents, I wish Wisconsin had one too. She knows she has little time left, she is still able to make decisions and talk with her doctors and the hospice nurses who help her. She has laid out her burial wishes, donations and obituary information. She is exhausted and would love the ability to die with dignity and not take her husband of 50 years with her, nor have her children and grandson see her completely drained and not able to move or function.
She would like to be pain free and rid of the constant pressure on her chest. Her consistent heartbeat of 120-140BMP that exhausts her and takes her mind and memory from her. Her weak legs and relying on her family to help her go to the bathroom. She would like her dignity. She would like to control her decision. She would like to go to sleep and I would like to honor her wishes.
These death with dignity laws stem from the basic idea that neither the government/politicians and their ideology, nor religious leaders and their dogma should make end-of-life decisions for terminally ill patients. It is clearly an agreement with the patient and their doctor, while the patient is still within their competent mental state and each law has a step by step process that must be followed by the patient and the doctor.
The process consists of two physicians who confirm the patient’s residence, diagnosis, prognosis, mental competence and voluntariness of the request. Two waiting periods, the first between oral requests and the second between receiving and filling the prescription are always required in many states. Many death with dignity laws mirror Oregon’s Death With Dignity Act. Oregon has been studied, used and acclaimed as a successful law with proven safeguards to protect patients and prevents misuse.
Here are the states that have current Death with Dignity Laws:
Current Death with Dignity Laws
Eight states and Washington, D.C., have death with dignity statutes:
California (End of Life Option Act; approved in 2015, in effect from 2016)
Colorado (End of Life Options Act; 2016)
District of Columbia (D.C. Death with Dignity Act; 2016/2017)
Hawai‘i (Our Care, Our Choice Act; 2018/2019)
Maine (Death with Dignity Act; 2019)
New Jersey (Aid in Dying for the Terminally Ill Act; 2019)
Oregon (Death with Dignity Act; 1994/1997)
Vermont (Patient Choice and Control at the End of Life Act; 2013)
Washington (Death with Dignity Act; 2008)
Montana does not currently have a statute safeguarding physician-assisted death. In 2009, Montana’s Supreme Court ruled nothing in the state law prohibited a physician from honoring a terminally ill, mentally competent patient’s request by prescribing medication to hasten the patient’s death. Since the ruling, several bills have been introduced to codify or ban the practice, none of which have passed.
Here, in the state of Wisconsin, they have a long history of considering aid-in-dying bills, starting in 1995. I will be totally honest with you, I am appalled at how long this state has been “trying” to get something passed that can be used to assist their terminally ill patients in this state.
In fact, the 2015-2016 session was the 8th time a death with dignity bill was introduced in the past 20 years. I am going to repeat that, it was the 8th time in 20 years that this type of bill was introduced and the proposed bill was not heard by either chamber in any of the previous seven attempts. In March 2015 Senator Risser and 4 co-sponsors, introduced companion Death with Dignity measures AB67 and SB26 in the Senate and Assembly, respectively. The bills were carried over to 2016 and were stalled in committee.
In June 2017 Wisconsin State Representatives Diane Hesselbein, Sondy Pope and 12 co-sponsors submitted AB 216, The Compassionate Choices Act and companion bill, SB312. Representative Pope stated as she introduced the bill, “[i]t is inhumane to force a person with a terminal illness to suffer needlessly. A compassionate society would allow them the choice to spend their last days where and with whomever they choose.”
The Compassionate Choices Act, SB 499, was introduced on October 10, 2019. It was referred to Senate committee on Health and Human Services. The Compassionate Choices Act, AB 552, was introduced on October 18, 2019 and was referred to House Committee on Public Health. Here is the paper trail:
Failed to pass pursuant to Senate Joint Resolution 1
If you can’t feel my deep sigh of frustration and disbelief, than I am not a very good writer. My mom’s story is not the only one I have to share. This one also takes place in Wisconsin. My college roommate was diagnosed with stage 2 breast cancer. She bravely fought and kicked this cancer to curb. We supported her and her family and were happy to hear the good news. Less than six months later in April, she was diagnosed with Gioblastoma and didn’t last a year fighting a cancer that is relentless. Her new husband was her caregiver and amazing at supporting her and making her as comfortable as possible. He put an addition on to their house so she could have her bed/chair with her friends and family surrounding her. He put a wheelchair accessible lift in their mini wagon and he signed over the adoption papers for her teen son. My friend did not want to go out in the way she did. She wanted her dignity and love of her family to not see her suffer so much. If she had the option, she would have had a grand party and celebrated with everyone before her health took a huge decline. I do believe she would have wanted a death with dignity law to help her and her family to remember her at her best and not at her worse.
This situation that my family is going through right now has opened my eyes to how I want to live out my life. As I turn 50 this year, I want to make sure I have another 50 years on this planet living in love and joy. I am grateful that my state of Colorado has an “End of Life” law that we can set up if a terminal life situation happens. I don’t know about you, but I would love to keep my dignity when the time comes. If given the option, I want to celebrate the amazing life I created while I can and lessen the pain and suffering on myself and my loved ones. What would you do?
If you would like your state to join in the Death by Dignity pursuit, click on this link and become an advocate for your state: https://www.deathwithdignity.org/learn/access/