End of Life with Options
This legislation would allow people with a terminal disease to request a prescription for medicine to end their life in a humane and dignified manner. This bill will help ensure that people suffering from terminal diseases in Pennsylvania retain control over their end-of-life care.
Behind EVERY bill is a STORY.
A story of real people who inspired the legislation and whose lives will be better because of it.
Read Heidi's Statement
My mother was diagnosed with vascular dementia. It was five years of watching a vibrant woman slip into another state where she could no longer engage with the world around her nor care for her activities of daily living. In her active dying stage, she was vomiting and aspirating her own bodily fluids. It is a criminal offense to drown someone, but my mother was allowed to essentially drown in her secretions, and we were unable to legally intervene compassionately. Ask yourself, is this how you would want your family to watch you die?
My mother’s Living Will was helpful but it did not go far enough. We should have the moral right to be allowed to pass peacefully and comfortably.
I believe that it is our moral obligation to uphold an individual’s right to end their life when diagnosed with a terminal illness that would result in prolonged suffering and or severe constraints to their quality of life. I believe we offer more compassion to our family pets at their end of life then we do our own human being family members. I would certainly utilize my right to Die with Dignity if I was diagnosed with a terminal illness. We need to stop fearing death but fear that journey between life and death without moral compassion.
Read Katie's Statement
I have long been a supporter of Death with Dignity, which allows qualified terminally ill and mentally competent patients to voluntarily request and receive a prescription medication to hasten their death. I applaud Senator Leach’s efforts to establish this law in Pennsylvania.
Death with Dignity laws have already been passed in eight states as well as the District of Columbia. Oregon was the first state to pass a Death with Dignity law in 1997 and this has served as a template for many of the subsequent state laws.
Death with Dignity is not without its controversies. Some individuals are opposed to it because of their own personal religious beliefs and these beliefs should be honored. However, I believe they should not stand in the way of others with different beliefs.
The other concern sometimes raised over Death with Dignity is its potential use for nefarious purposes, particularly by relatives or others who would benefit from a person’s death. This concern should be assuaged by the rigorous checks and balances that have been incorporated into Pennsylvania’s Death with Dignity bill to prevent this from happening.
As with many supporters of Death with Dignity, I too have my own personal story. Although I have long been an advocate of Death with Dignity, it took a personal turn last year when I was diagnosed with Stage 4 breast cancer. I began researching the Death with Dignity laws in various states with the thought of relocating to one of them as my disease progressed. But the thought of relocating to a different state, with all the administrative and logistical hassles, is quite overwhelming. And it would be very disruptive to my everyday life and I would undoubtedly see less of my son and grandchildren, who live 20 minutes away from my current PA residence. I was therefore very heartened to learn of Senator Leach’s attempts to pass a Death with Dignity law in Pennsylvania.
I am a physician and have taken care of terminally ill patients. I also watched my mother die a very slow and miserable death from esophageal cancer. In both cases, it was heartbreaking to see the pain and suffering. As many people point out, as a society we are compassionate enough to euthanize our beloved cats and dogs when they are suffering terminal illnesses yet lack the same compassion to offer this to our fellow man.
Passing a Death with Dignity law in Pennsylvania seems to be an uphill battle. I am aware that Senator Leach has introduced bills on several previous occasions, but none have made it out of the Judiciary Committee. I am very grateful for his perseverance, however, since this should be an option for every Pennsylvanian – and every American. Perhaps the time is right and Pennsylvania can follow the lead of other states that have successfully implemented Death with Dignity laws.
For anyone wanting to learn more about Death with Dignity, I would highly recommend the documentary film “How to Die in Oregon.” It follows real people with real illness making difficult life and death decisions within a highly structured process.
Read Amy's Statement
My mother was diagnosed with breast cancer in 2016. In early 2019, we found out it had metastasized to her liver and bones. The cancer was labeled Stage 4, incurable but manageable with treatment. For a year, my mom underwent a combination of radiation and chemotherapy treatment that took a humongous physical and emotional toll. In late December of 2019, we were told the cancer had done irreparable damage to her liver and she would begin to experience liver failure. She was immediately sent home and put on hospice care.
I will never forget that at dinner one night, I glanced at my mom from across the table and I could tell by the look on her face she was petrified. She was surrounded by a table full of family members in conversation and yet she was consumed with panic. Physically she was in the room, but mentally she was somewhere deep in her own terrifying thoughts. And who the hell wouldn’t be? She had just received essentially a death sentence and was expected to return home and go about her life. How could anyone be asked to do that? How could anyone enjoy time with their family with that kind of weight on their shoulders?
Seeing that fear behind her eyes absolutely killed me, because I knew there was nothing I nor anyone else could do to help her battle those demons and give her peace of mind.
As the days passed, my mom got into the habit of focusing on minute details such as light switches being turned on and having things in a precise order at the kitchen table. I later realized it was because at this extremely vulnerable stage, the little things were the only things she still had any control over, or any say in. Having control in our lives is a basic human need, like food or water. A lack of control over what lied ahead caused my mother to be very anxious and sad.
My mom’s final days came quickly and during that time she was left bedridden and completely unable to care for herself. At first, she still had her sass and sense of humor, but as time passed, those qualities that we all cherished began to fade as she slipped in and out of a dream state. My mom did not have the chance to say any goodbyes. When she did speak, she alternated between telling me how exhausted she was and apologizing to me for having to care for her. I felt irate, because the very last thing my mom should be saying to me at the end of her life is, “Sorry.” She shouldn’t have felt regret. She should have felt peace, comfort and closure.
My mother relentlessly fought an aggressive cancer for years. She always kept a positive outlook and never complained. She never let cancer define her life. She was a warrior and the bravest person I’ll ever know. She deserved to leave her life and her loved ones on her own terms.
My mom was familiar with the Death with Dignity bill and she was very supportive of it. I can’t help but wonder how her ending would’ve changed if this bill had been made into law. Would she have been more comfortable? Would she have had more peace of mind? Would she have gotten the proper closure? The ending my mom received is not something she would’ve wished upon herself or anyone else. It’s not something she would want for me. And because my mom no longer has a voice, I will use mine to share what she believed in.
Read Kelly's Statement
Read Dennis' Statement
My name is Dennis Marcucci, I’m the brother of John Marcucci who passed away last November of metastatic prostate cancer that spread to his bones. John was an extremely gifted artist. Not one class did he ever take, it was just god given. He was also very independent; he would walk everywhere. He did not believe in taking the bus, the subway, he would just walk to work, galleries or to the main library in center city. The reason I am telling you this is because when this cancer spread to his bones it took away his ability to be independent.
He then continued to try to draw while he was in bed but eventually it spread to his drawing arm and he was no longer able to draw. That was the beginning of the end basically because the pain became worse and worse and worse. He became unable to go to the bathroom by himself so I would have to pick him up under his shoulders, which was extremely painful, and put him on the portable toilet by his bed. Eventually that became impossible as he lost the ability to use his own back muscles to sit up. I had to put him in diapers and roll him over to clean and change him. This caused him extreme embarrassment and extreme pain.
Towards the end of his life he would always say to me, if there was something I could take I would to end this.
And that is what this is all about; giving people the freedom to choose not to get to this point but to end it. The hypocrisy on this issue is amazing as I have people telling me if a person decides not to pursue kidney dialysis, which will then lead to their death, well that’s their choice. If a person has stage 4 cancer and they decide to end their treatment, which will expediate and lead to their death, people say well that’s their choice. Why isn’t this their choice? Why can’t they take something to end their suffering? That is what this is all about and I hope the people listening to this pass this bill because this is greatly, greatly needed. Thank you.
Read Daylin's Statement
Hi. This is Senator Daylin Leach and I’m just her to tell you a little bit about why I introduced the Death with Dignity with bill which would give people options with End of life decisions. They could…if they had a terminal diseases and there was not hope and they had less than 6 months to live they could get proof of that from a physician and then a second physician and then get medication where they could choose to end their live if they wish.
I first got involved with this issue because we had two very close family members….my wife’s sisters husband and my wife’s mother who died from cancer within in a few years of each other and it was very difficult to watch in both cases. I found myself thinking that if I was ever in that position, I would want to have control over what kind of quality of life I had, how much suffering I had to endure and the circumstances in which my life ended. So we started researching other states around the county and we introduced this bill. This seems the sort of issue that should transcend normal ideology and partisanship. Anybody could be in this position or anyone could have a loved one in this position and I promise you 100% of people given the right and in a situation bad enough…would want the option to end their life. Keep in mind, when people get the medicine they don’t usually take it right away….sometimes they never take it…..sometimes just having it is enough to give them the strength to go on. We would never force a pet, a dog or a cat, to endure needless pointless suffering. We should treat ourselves and our human loved ones no differently. I am proud of introducing the bill. I am hoping that we will become the next state to allow people to make their own decisions about how they want to end their life when it’s appropriate.
Jennifer & Glen
Read Jennifer's Statement
Imagine you are going about your day and just like that, a phone call can change your life! Well, that is what happened to us and things have never been the same. My husband, Glen has been suffering from a Grade 2 Astrocytoma brain tumor since 2007. Due to where his tumor is located it can never be removed. If so, he will be completely paralyzed on his left side. His first surgery, was in 2007 at Johns Hopkins Hospital by Dr. Alfredo Quinones. Who by the way is an amazing Neurosurgeon. He did a partial resection. Unfortunately, due to a regrowth in 2012 he had to undergo a 2nd surgery under the care of Dr. Q.
In 2016, Dr. Q (as he is called) left Johns Hopkins and went to the Mayo Clinic in Jacksonville, FL. With that being said, we were left wondering who was going to take care of him, due to the location of the tumor. Imagine, having a tumor that is on your motor skills and being told that, one wrong move and you’re paralyzed? From 2016-2019 we felt lost. We saw a Neuro Oncologist at Johns Hopkins, but it was not the same. The family dynamics piece was missing. In mid-2018, Seizures were occurring weekly. The cancer now spread from the right side of his brain over to the left now as well. So what do you do? Is this the end? You start to pray. The life you thought you were going to have with a loved one is going to come to an end. The Dr. you have trusted all those years to keep a watch on your husband was no longer around. I could not sit back and let this situation take over. We, (I) had to fight for my husband.
Linked in is so nice for companies to reach out to make so many connections. I still had a connection with one of Dr. Q’s associates, Dr. Hugo. I thought, why don’t I message him to see if Dr. Q could take a look at his MRI. Since one of the last things Dr. Q said to us when he left Hopkins was “If we ever doubted Glen’s health, please reach out to him”. So I messaged Dr. Hugo and that same day, I had a call from Dr. Q. Imagine my surprise & tears of joy. He asked me what was going on? We talked and he said here is what I want you to do as he explained everything to me. As I got the MRI images and loaded them to their system. A few days later, an email was sent from Dr. Q with about 10 people on it and said team review MRI and get back to me. I was amazed. Sunday morning about 9:30am, my phone rang. It was Dr. Q, he said Jennifer & Glen are you ready to come to FL so I can once again take care of my family members. I said yes and started to cry. He said your tumor has waited too long to be treated and you need chemo & radiation. Not even a month later, we went to FL for 7 weeks, stayed in a hotel while he got his treatments.
We had such a strong support system for us to be able to do this. I had to make the best decision for my husband. A “Big” Thank you to each and every friend, relative, co-worker, stranger etc. that made that trip possible for us.
Currently, we do travel to Florida from PA every two months for check ups. The doctors all want to make sure that if anything changes, they can catch it in time.
Why did I tell you all this? I wanted you to understand, that not everybody has the opportunity or the care that we have had. People are suffering and want to die with their dignity. Not knowing who they are or their family members. Even who their children are if they have young ones. Make the decision to end their life as they are “normal”. Is my husband cured of brain cancer? No, brain cancer you can never cure. It will never go away. This is something he lives with everyday. It slowly does take away who my husband is.
As I’m sure you are aware anyone with cancer, the final journey is not very pleasant. It is a lot on the patient, family & caregiver. The cancer patient has fought the tough battle and when nothing else can be done, why continue to suffer? The cancer and drugs take over and then who are they? Let them have a piece of mind to go out with “Dignity”. I know that I do not want to put my family through all the pain & suffering, let me make that choice. Let me take the burden off of them. I fully support the “Death with Dignity”!
Soon I will reintroduce the Pennsylvania “Death with Dignity Act.” This bill would allow people with a terminal disease to request a prescription for medicine that would end their life in a humane and dignified manner. This legislation is based on an Oregon law that has been in effect for several years and was upheld by the United States Supreme Court.
My inspiration for this bill was a close family member’s experience with Non-Hodgkin’s Lymphoma. The treatments were aggressive and lengthy, and they all failed. If any pet owner in America had forced a dog or cat to endure such treatment, he or she would have been charged with animal cruelty. Yet human beings are, under current law in Pennsylvania, condemned to suffer unspeakable agony with no legal recourse. This must change.
Most, if not all of us, want to determine our own end of life decisions. My bill would make that possible. To be prescribed life ending medicine, a patient must adhere to strict criteria:
- The patient must be a resident of Pennsylvania.
- The request must come from the patient, on a form prescribed in the statute.
- The request must be witnessed by two people, one of whom would have to be a non-relative who had no financial stake in the death of the patient.
- Those witnesses must certify that the patient is of sound mind.
- The patient’s attending physician must certify that the patient has a terminal disease, has less than six months to live, and has been notified of their options including the possibility of comfort care, hospice care or pain control.
- A second “consulting physician” must certify everything the attending physician did.
- The patient would have the right, at any point, to decide not to seek the prescription described in this bill.
There are numerous other protections in the bill which will guarantee that every request made under the Death with Dignity Act is voluntary, informed and made without coercion of any kind. This bill will go a long way toward ensuring that people suffering from terminal diseases in Pennsylvania retain control over their end-of-life care.
The End of Life with Options Act would allow people with a terminal disease to request a prescription for medicine that would end their life in a humane and dignified manner. This legislation is inspired by an Oregon law that has been in effect since 1997 and was upheld by the United States Supreme Court.
There are numerous protections in the bill which will guarantee that every request made under the Act is voluntary, informed and made without coercion of any kind. To be prescribed life ending medicine, a patient must adhere to strict criteria. These include;
The request must come from the patient, on a form prescribed in the statute.
The request must be witnessed by two people, one of whom would have to be a non-relative, or employee at the health care facility, who had no financial stake in the death of the patient.
The patient’s attending physician must certify that the patient has a terminal disease, has less than six months to live, and has been notified of their options including but not limited to the possibility of comfort care, hospice care or pain control.
The patient would have the right, at any point, to decide not to seek the prescription described in this bill.
This bill will go a long way toward ensuring that people suffering from terminal diseases in Pennsylvania retain control over their end-of-life care.
In the News
Op-ed by State Senator Daylin Leach
Anyone who follows the news knows that we, as a society, frequently debate where personal autonomy ends and where the state’s right to intervene begins. Whether the issue is who we marry, what books we read, what substances we consume, when we reproduce, the question is the same: do we decide, or does the government?
Efforts to introduce “Death with Dignity” legislation to the Pennsylvania General Assembly have repeatedly stalled, but some lawmakers and activists think future efforts will succeed as other states enact similar laws. “Every year, things take time in the Pennsylvania legislature, especially controversial things, but we feel this is inevitable,” said state Sen. Daylin Leach, D-Montgomery, who has authored numerous medical aid-in-dying bills since 2007.
My ordeal, and the tragic end of my father’s life, have led me to become a supporter of the option of medical aid in dying for mentally sound, terminally ill adults with a prognosis of six months or less to live. Two bills have been introduced in Pennsylvania, by Sen. Daylin Leach (SB 559) and Rep. Mark Rozzi (HB 1162), that are modeled after the nation’s first law to authorize medical aid in dying: the Oregon Death with Dignity Act.
Representative Mark Rozzi and Senator Daylin Leach have both introduced bills aim to allow doctors to prescribe life-ending medication to terminally ill patients.
Death with Dignity – Town Hall Meeting
How can I help?
People often ask us, how can I help? If you believe in this issue, here’s the answer!
Contact your PA State Senator and Representative, tell them you support this bill, and ask them to co-sponsor this bill. Here is the link to the co-sponsorship Memo. Also tell them you would like the bill brought to a vote.
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