“Nursing is more than delivering care; it involves patient advocacy as well. Because they have the most direct interaction with patients, nurses are in the ideal position to advocate for each one on an individual basis. The American Nurses Association (ANA) stresses the importance of patient advocacy in its Code of Ethics and lists three core values that form its basis: preserving human dignity, patient equality, and freedom from suffering. Human dignity can be thought of as an individual’s sense of self-worth and self-respect. It can encompass many things, including the right to fill basic needs, like food, shelter, and personal safety. In the healthcare environment, human dignity is more focused on aspects of privacy, respect, and autonomy. Certain care episodes can be frightening for some patients, and exams and procedures often include elements that may erode human dignity. Patients are exposed and vulnerable, they’re poked and prodded, they’re questioned about intimate details, they’re subjected to the scrutiny of strangers. Part of nursing’s advocacy role is to preserve human dignity throughout the continuum of care.” (Passmore, 2018) Respect for human dignity is such an import part of our jobs as a health care providers, we see our patients at possibly the worst time in their life. Patients are scared and exposed and it is up to us to make them feel safe and secure. Everybody deserved to be treated with dignity and respect and especially when they are in the middle of something so scary and exposing.
I am going to discuss one of the hot topics relating to respect for human dignity in the medical field at the current time. The death with Dignity movement has become a highly talked about topic that has faced a lot of opposition, but also has a lot of support. This topic hits home for many people but it also hits a nerve with many others.
“For more than 20 years, Death with Dignity National Center, Death with Dignity Political Fund, and their predecessor organizations have defended and advanced policy reform based on the model legislation, the Oregon Death with Dignity Act. During the first decade of our existence, from 1993 to 2003, our goal was to define an effective policy, i.e. the model legislation, the Oregon Death with Dignity Act, and to defend it against legal challenges, both in state and federal court.
In 1993, businessman Elven “Al” Sinnard, attorney Eli Stutsman, attorney Mark Trinchero, Dr. Peter Goodwin, and nurse Myriam Coppens founded Oregon Right to Die, a political action committee, to write and pass the Oregon Death with Dignity Act. The following year the Oregon Right to Die PAC campaigned successfully for the passage of Measure 16 in Oregon; 51% of Oregon voters approved the Death with Dignity ballot initiative which created the Oregon Death With Dignity Act, allowing those who are terminally ill to hasten death in consultation with their physician and under strict safeguards. This passage made Oregon the first U.S. state and one of the first jurisdictions in the world to officially legalize medical aid in dying. During the second decade, roughly from 2004 to 2014, we focused on expanding to new frontiers on a state-by-state basis, accomplishing policy reform in both Washington and Vermont. In addition, from 2001 to 2006 we defended Oregon’s law against U.S. Attorney General John Ashcroft who attempted to block it by authorizing federal drug agents to prosecute doctors who prescribed life-ending medication to help terminally ill patients die. In January 2006, the US Supreme Court voted 6 to 3 in favor of Death with Dignity in the case of Gonzales v. Oregon, ruling that former Attorney General John Ashcroft overstepped his authority in attempting to prosecute Oregon’s physicians and pharmacists. In 2008, we successfully led the coalition for Yes on I-1000, Washington State’s Death with Dignity campaign, to a 58 percent to 42 percent victory. The Washington Death with Dignity Act went into effect in March 2009. In 2011, we partnered with with Patient Choices Vermont to help pass Death with Dignity legislation through the state legislature. We also established a steering committee in Massachusetts to explore a ballot initiative in 2012. The effort transitioned into Death with Dignity 2012, the group that successfully put the issue on the ballot. The measure, Question 2, was narrowly defeated 51 percent to 49 percent. In 2013, the Vermont legislature passed and Governor Shumlin signed Act 39, the Patient Choices and Control at the End of Life Act, the first Death with Dignity statute in the US adopted through the legislative route.
In late 2014, we began working with legislators in California to draft a Death with Dignity bill. The California End of Life Option Act ultimately passed in September 2015 and Governor Brown signed it on October 5. The law went into effect on June 9, 2016.”(History, 2018)
The death with Dignity cause has come such a long way since it began, but there is still so much more that needs to be done to really get justice and give these patients a way to leave this world on their own terms without the stigma of suicide. As it stands right now there are only seven states that have legislation allowing death with dignity, these states include: California, Colorado, Hawaii, Montana, Oregon, Vermont and Washington. The goal for the death with dignity cause is to educate patients and physicians country wide into the reasons why this cause is necessary and to eventually have some sort of legislation in all 50 states. “The mission of the Death with Dignity National Center is to promote death with dignity laws based on our model legislation, the Oregon Death with Dignity Act, both to provide an option for dying individuals and to stimulate nationwide improvements in end-of-life care.
Death with Dignity National Center is a 501(c)(3) nonprofit organization that
•expands the freedom of all qualified terminally ill Americans to make their own end-of-life decisions, including how they die;
•promotes death with dignity laws around the United States based on the groundbreaking Oregon model;
•provides information, education, and support about Death with Dignity as an end-of-life option to patients, family members, legislators, advocates, healthcare and end-of-life care professionals, media, and the interested public.
•mounts legal defense of physician-assisted dying legislation.”(About Us, 2018)
The death with dignity movement is something that is very close to my heart. Being a nurse we see all sorts of tragic, heart breaking and amazing stories. As health care providers we meant to “Do No Harm”, these words are so true with this cause. As a nurse, I hate to see someone suffer especially if they are terminal. Watching someone suffer until they eventually die is one of the most heart-wrenching things to watch. Knowing that there is an alternative to this or helping to ease someone’s suffering is the greatest kindness you can give them. Suffering until death takes such a toll on the family members, the patient and everyone around them and involved in their care. The death with dignity movement helps stop the cruelty. It is also trying to demonstrate and educate the public on how this is not suicide but it is giving someone the respect and dignity they deserve in their final times. I am a strong supporter of this movement and I hope to see legislation in all 50 states and worldwide. Giving someone the respect they deserve when facing a terminal illness is the greatest kindness you can give someone. This is not simply an act of suicide, but it is a peaceful means to an end. The death with dignity cause not only creates legislation to support this means, but it also educates health care providers and the public about what it is and why it is so important. This is the story of Brittany Maynard, you may have heard of her as she was a patient who chose to die with dignity. “On New Year's Day, after months of suffering from debilitating headaches, I learned that I had brain cancer. I was 29 years old. I'd been married for just over a year. My husband and I were trying for a family. Our lives devolved into hospital stays, doctor consultations and medical research. Nine days after my initial diagnoses, I had a partial craniotomy and a partial resection of my temporal lobe. Both surgeries were an effort to stop the growth of my tumor. In April, I learned that not only had my tumor come back, but it was more aggressive. Doctors gave me a prognosis of six months to live. Because my tumor is so large, doctors prescribed full brain radiation. I read about the side effects: The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. My quality of life, as I knew it, would be gone.
After months of research, my family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left. I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind. I don't want to die. Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. I did not want this nightmare scenario for my family, so I started researching death with dignity. It is an end-of-life option for mentally competent, terminally ill patients with a prognosis of six months or less to live. It would enable me to use the medical practice of aid in dying: I could request and receive a prescription from a physician for medication that I could self-ingest to end my dying process if it becomes unbearable. I quickly decided that death with dignity was the best option for me and my family. We had to uproot from California to Oregon, because Oregon is one of only five states where death with dignity is authorized. I met the criteria for death with dignity in Oregon, but establishing residency in the state to make use of the law required a monumental number of changes. I had to find new physicians, establish residency in Portland, search for a new home, obtain a new driver's license, change my voter registration and enlist people to take care of our animals, and my husband, Dan, had to take a leave of absence from his job. The vast majority of families do not have the flexibility, resources and time to make all these changes. I've had the medication for weeks. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms. I would not tell anyone else that he or she should choose death with dignity. My question is: Who has the right to tell me that I don't deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me? Now that I've had the prescription filled and it's in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it. Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain. Now, I'm able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net. I plan to celebrate my husband's birthday on October 26 with him and our family. Unless my condition improves dramatically, I will look to pass soon thereafter. I hope for the sake of my fellow American citizens that I'll never meet that this option is available to you. If you ever find yourself walking a mile in my shoes, I hope that you would at least be given the same choice and that no one tries to take it from you. When my suffering becomes too great, I can say to all those I love, "I love you; come be by my side, and come say goodbye as I pass into whatever's next." I will die upstairs in my bedroom with my husband, mother, stepfather and best friend by my side and pass peacefully. I can't imagine trying to rob anyone else of that choice.”(Maynard, 2014) This story really demonstrates why having this type of legislation is so vital. We needs to be able to give patients the choice to decide how the die, this is something they need to do on their own terms.
The impact of death with dignity has yet to be seen, I can predict that these types of legislation will make it easier for patients to choose to die with dignity in all 50 states. This act will give patients and families the peace of mind that they can leave this world with respect and dignity, they will be able to decide how and when they end their suffering. I think that this act will bring about a whole new type of legislation and it will also change the way the see suffering and terminal diseases