This is a true and wonderful story shared by Diana Gilbert, a volunteer with Casa de la luz Hospice.
Years ago, Diana’s sister told her that she had three months to live. She asked Diana to “ help her die”. Stunned, Diana asked her what she meant and her sister gave her a list of the following:-
-Die at home.
-No artificial means are to be used to keep her alive.
-Pain medicines only to help her with pain.
-A living will
and to: -DIE WITH DIGNITY.
They worked everything out as she wanted and her doctor cooperated with her. A living will was drawn up, but at that time, a living will was not recognized in the state. She died at home with no tubes to keep her alive; her doctor and nurses came in regularly to administer drugs for pain and she died peacefully around her family and loved ones, smiling till her last breath.
Diana’s sister died with dignity.
This was in 1978, when there not much idea about Hospice Care. But, thirty years later, Diana is a proud hospice volunteer. The peaceful and dignified death of her terminally ill sister, which very few get, touched her heart and drew her to the aim of serving and helping such patients ‘die with dignity’.
Diana says she loves being involved with the patients in the Hospice and making their small moments big. She knits, cooks and reads stories to them, makes them solve crossword puzzles and even dresses up as Santa or in a Halloween costume on holidays! She says that all patients are different and listens to everyone’s past, family, likes, dislikes and what makes the patient smile. Diana has new surprises for the patients all the time. She remembers that once she was sitting near a patient as the harpist came in and began to play. The patient opened her eyes and asked her: “Am I in Heaven now?” Diana replied: “No, not yet.” That was a moment, she says, maybe small to others, but very precious to her that she will never forget.
Little things mean a lot to the terminally ill individuals, who are mostly alone or outlived by family and friends and already are instilled with the fear of death. The Hospice Care aims to add life to the little time, the patient is left with, making death as eventful and dignified as life.
When asked: “How can you watch a patient die?”, Diana replies: “ I don’t watch a patient die; I believe that I am there to help them pass to the next stage of life”.
Unfortunately, not all stories have such happy endings. Like, a coin has two faces, the other face is hard and bitter.
27th November, 1973
Aruna Shanbaug, a nurse working in the KEM hospital, Mumbai was brutally raped and choked with a dog chain, cutting off blood supply to her brain, leading to a coma.
For 42 years, she was kept on a life supporting system, which is the longest of it’s own kind.
Her friend and social activist Pinki Virani filed a petition in the Supreme Court of India in which she argued that the continued existence of Aruna is in violation of her right to live in dignity. But the Supreme Court rejected it.
She was denied euthanasia and eventually died of Pneumonia in 2015, at the age of 66.
Her death post trauma and unending pain with no gain for four decades left us with a dark lot of unanswered questions:
IS DEATH WITH DIGNITY BETTER OR A LIFE WITH UNBEARABLE SUFFERING AND HUMILIATION?
AND SHOULDN’T DYING WITH DIGNITY BE AS IMPORTANT AS LIVING WITH DIGNITY?
Death with Dignity is an epoch-making global issue that aims to provide an end-of-life option to certain eligible individuals to legally request and obtain medications from their physicians to end their life in a humane, peaceful and dignified manner. Those eligible to voluntarily request are terminally ill patients with a confirmed prognosis of six or fewer months to live or exceptional conditions. Death with dignity laws emphasize on the right of the patient to make their end-of-life decisions, irrespective of the government, politicians or religious leaders.
Euthanasia and Physician-assisted dying are the terms that often run parallel to death with dignity. Originating from the Greek words: Eu (good) and Thanatosis (death), euthanasia means good death or gentle and easy death. It is defined as the practice of ending the person’s life by a lethal injection or suspension of medical treatment. There are six ways to implement Death with Dignity via. Euthanasia. These are:
1) ACTIVE EUTHANASIA (To end life by use of drugs with or without Physician’s aid).
2) PASSIVE EUTHANASIA ( when someone lets the patient die by withdrawing or withholding treatment).
3) VOLUNTARY EUTHANASIA (done with the will of the subject).
4) INVOLUNTARY EUTHANASIA ( when someone else makes the decision for the patient who is unable to make a meaningful choice between living and dying).
5) INDIRECT EUTHANASIA ( treatment for reducing pain that has a side effect of cutting short the patient’s life) and
6) ASSISTED SUICIDE (patients going to die need help and ask to kill themselves.)
Though euthanasia is not legal in most parts of the world, this remains a burning topic for debate that: IS EUTHANASIA A FORM OF ASSISTED SUICIDE OR AN EXCEPTION TO HUMANITY?
The affirmative side argues that euthanasia provides Death with Dignity. It helps in the speedy termination of all forms of trauma, suffering and provides relief when quality of life is low. Not only this, euthanasia also gives freedom of choice to the patients and relieves mental suffering of both patient and the family. Besides, it frees up medical expenses to help other people and the organs can also be rightfully used. It is ironical that how we cite state execution as “cruel and unusual punishment”, yet refuse the same protection for one’s right to die with dignity!
The negative aspect claimed is that Euthanasia is demeaning the sanctity of life and that only god can take away human life. Also, there are views that euthanasia might lead to healthcare cost containment and it is highly immoral for a physician or a medical worker to be involved in directly causing death. People are worried that once Voluntary euthanasia is legalized, it can cause a “slippery slope effect”, giving rise to a string of cases of involuntary euthanasia and abuses. It has been argued that euthanasia not only destroys life which has the potential of miraculous recovery unknown to the patient, doctor or the family, but also discourages scientists who are researching for a cure to the incurable ailments.
Going back to the history, we see that euthanasia was first started in ancient Greece and Rome around the fifth century B.C. against the Physician’s Hippocratic oath. During the middle ages, it seemed quite out of the question, while it became a topic of discussion in seventeenth and eighteenth century.
The tragedy struck when in 1940s, Non-Voluntary euthanasia practiced by the German physicians to ‘eliminate’ the diseased and disabled Germans in closed Gas chamber killed 300,000 people! Even worse was the practice of Involuntary euthanasias, including Child euthanasia under the Nazi regime.
Death with dignity via. euthanasia became a public issue with the imprisonment of Dr. Jack Kervokian, popularly known as ‘Dr. Death’, who was charged with second-degree murder in 1999 for conducting voluntary euthanasia on a patient in the final stage of ALS( Amyotrophic Lateral Sclerosis). He conducted almost 130 euthanasias and said : “How can you regret helping a suffering patient?”
Arguments, supports, protests, discussions have continued till now, proving that Death with Dignity is one of the most pressing social concerns of our time. It’s time we, as a society stand up to the cause of it. Many countries and polls have repeatedly shown strong support for terminally ill patients’ right to die with dignity, yet controversies, moral and ethical issues and religious beliefs have influenced many to not consider it.
Most religions are against Death with Dignity via. Euthanasia for a number of reasons, like: it is forbidden by god and interferes with the cycle of birth and death and that God has the right to take away a human life, which is sacred. These religious views play a major role in shaping public opinion on the matter.
While the present society shows solid support for legalization of Death with Dignity laws, polls demonstrate that there is a significant drop when specific details of legislative proposals are examined. But, the subject remains to be a significant source of political argument and social contention.
“All I am asking for is to have some choice over how I die”, wrote terminally ill patient Louise Schaefer in a letter to ‘The Sacramento Bee’. “ Portraying me as suicidal is disrespectful and hurtful to me and my loved ones. It adds insult to injury by dismissing all that I have already endured’ the failed attempts for a cure, the progressive decline of my physical state and the anguish which has involved exhaustive reflection and contemplation leading me to this very personal and intimate decision about my own life and how I would like to end it.”
As patients come closer to death, certain organs stop performing as good as they used to and body functions gradually decline. They become incapable of performing even simple tasks like putting on clothes, going to the restroom without assistance, eat on own and sometimes, even breathe without the help of a machine. The sudden need to depend on someone for everything brings the feeling of helplessness and grief.
A stroke in 2005 in Athens left Tony Nicklinson with ‘locked-in-syndrome’- mentally sound, but paralysed from the neck down and unable to speak. He sums up his existence as ‘undignified, miserable, demeaning and intolerable’. He claims the current law to be anomalous and discriminatory as he fights for his right to die with dignity.
A survey done on investigating the personal attitudes of terminally ill Cancer patients in jurisdictions that permit death with dignity, most participants (73%) said yes to need to legalize euthanasia, citing pain and individual’s right to choose as their major reasons.
The remaining 27%, who opposed the legalization, cited religious and moral objections as their central concerns.
From the patient’s point of view,timing and manner of an inevitable death becomes more important than the matter of life versus death. Death with dignity laws give the patients as well as their families control and peace of mind. The family members also need not helplessly endure watching a loved one die a horrible death.
Afterall, who doesn’t want to die in peace and dignity?
When we seek the medical point of view, there are mixed reactions on the subject. It is difficult for the doctors who have sworn the Hippocratic oath to end a life. Also, many physicians who support the end-of-life options decline to declare it publicly for fear of repercussions in their workplace or medical community.
Nevertheless, in the utilitarian point of view, many doctors believe that it is necessary to induce death for incurable patients whose sufferings are not manageable.
In a survey conducted by Medscape, it was found that from 46% doctors favoring physician-assisted dying in 2010, the rate increased to 54% in 2014.
Death with dignity legislation protects Physicians and medicos by stipulating steps and laws that they must follow.
The duty of a doctor is not killing the patient, but killing the pain.
Legally speaking, Death with dignity law has brought broader societal effect.
Globally, various forms of euthanasia and physician assisted dying depending on the condition are legal in the following places: Netherlands, Belgium, Colombia, Luxembourg, Ireland, Finland, India, Switzerland, Mexico, Oregon, Washington, Vermont, Montana, California and Canada.
On October 27, 1997, Oregon enacted the Death with Dignity act, allowing the terminally ill Oregonians to end their lives through the voluntary self-administration of lethal medications, prescribed by a physician for that purpose.
The Oregon Death with Dignity act saw a dramatic improvement in the end-of-life care, particularly in pain management, Hospice care and support services for family members.
Most people in their last stage of life, battling with an incurable pain, wish to die at home or home-like environment. On the national level, only 20% die at home, but amongst the people accessing the Oregon death with Dignity act, 97% are on hospice at the time of death, having a peaceful and dignified death.
The ethics of death with dignity continues to be argued till today. Bio-ethics has an interdisciplinary nature and is as systemization of the morality of the society.
For a human being whose death is imminent and inevitable, enabling to make a judgement on the grounds of Bioethics depends on all it’s sub-systems- Human morality, religious ethics and medical ethics. No single ethics pre-dominates in this situation.
Ethically, for a dying person, it maybe rational to choose to escape unbearable suffering at the end-of-life. Furthermore, to alleviate suffering by providing aid-in-dying maybe justified as the Physician’s duty.
On the contrary, it is also argued that going against the traditional duty of the Physician to preserve life and do no harm is not ethically permissible. Also, on the name of ‘Death with dignity’, abuses, unwanted involuntary euthanasia can also occur and for instance, the poor, disabled or elderly might be pressurised to choose physically-assisted death over more complex and expensive Palliative care options, which is highly unethical.
The most difficult problem of ethics is enforcement and stringent laws have to be made and implemented to serve the best interest of individuals seeking Death with Dignity.
Laws, views and ideas vary greatly from country-to-country and individual-to-individual. It is a crucial moral discernment for some, while for others it may represent either casuistry or moral fiction.
“Human rights rest on Human Dignity” and “There is no dignity for the sufferers or the torturers”. “They didn’t get any dignity in life, they might as well get dignity in death”.
We all can be advocates for Death with Dignity. From contacting the legislator to spreading the word on social media and sharing stories and personal views on volunteering and creating awareness, people’s voice does matter.
Irrespective of whether the state has aid in dying statute or not, people still have end-of-life care options and solutions. Death with Dignity can also be brought by providing the patients with the following :
1) ADVANCED DIRECTIVE / LIVING WILL , that allows the patient to document his/her wishes concerning medical treatments at the end of life, like DO NOT RESUSCITATE( DNR) order.
2) MEDICAL POWER OF ATTORNEY/HEALTHCARE PROXY, which allows the patient to appoint a trustworthy person to make medical decisions on his/her behalf.
3) POLST (Physician’s Order for Life-Sustaining Treatment) and MOLST( Medical Orders for Life-Sustaining Treatment): These measures honor the patients’ healthcare wishes during an emergency and the forms are also portable. It is not a substitute for advance directive.
4) PALLIATIVE CARE, which refers to the treatment of symptoms and stress of serious illness along with improving quality of life and providing comfort. Palliative care can be received at hospitals, clinics or even home.
5) HOSPICE CARE, which seeks to optimize the quality of life in the terminally ill, by neither hindering nor hastening the dying process, enabling a peaceful death.
These end-of-life care options come as true blessings for the people wishing to die in dignity, making memories out of the little moments, they live in.
Death with Dignity act would not result in more people dying, but in fewer people suffering, because the purpose is:
“Adding life to years, not just years to life”.
: Wikipedia (Aruna Shanbaug case)
: Wikipedia (History of euthanasia)
: http://www.forbes.com/ Louise Schaefer
: mail online news/tony nicklinson
: Oregon.gov/ google.com
: Quotegram (Robert Maynard and James Clavell’s quotes.)