How Should You Die When You’ve Had Enough of Life?
Imagine you have a terminal illness and your life expectancy is 6 months. How about a terminal diagnosis where you could expect to live for another five, ten or, more years? Many chronic diseases, such as COPD, Amyotrophic Lateral Sclerosis (ALS), or, Dementia can have horrific symptoms such as chronic debilitating pain, loss of movement, ability to breathe, or even a loss of self. For many, it is the loss of quality of life and control that are the hardest to endure.
Every Human being of adult years and sound mind has a legal right to determine what shall be done with his own body. ~ Justice Benjamin Cardozo (1914)
If we wish to end our suffering, how can we die when modern medicine has so many ways to postpone our death and keep us alive? By pushing life-sustaining futile treatments at the end-of-life, the medical community often increases suffering amid promises of a longer life. In reality, many people survive for only a few days or weeks.
Whenever the illness is too strong for the available remedies, the physician surely must not expect that it can be overcome by medicine. To attempt futile treatment is to display an ignorance that is allied to madness.”– Hippocrates
Perhaps you are among the 30% of Americans who created an Advance Care Directive, spelling out your end-of-life wishes and naming a Surrogate to speak for you when you cannot. Unfortunately, even with an ACD, more people than ever spend their last days in sterile facilities, incoherent, sustained by ineffective pain medication, and tethered to machines that keep them alive but not living. Worse, often these treatments go directly against their explicit wishes. According to a 2020 study in the Journal of the American Medical Association, 38% of patients hospitalized in the last six months of life, “with chronic life-limiting illness… with treatment-limiting POLSTS, received intensive care that was potentially discordant with their POLST.” Where is the benefit to a dying person or their family in being kept alive in an ICU with treatments that go against their wishes?
When suffering becomes intolerable, here are some ways you can choose to die…
1. Do Nothing: Let nature take its course by withholding or withdrawing life-sustaining treatments such as dialysis, a feeding tube or, a respirator. Refusing CPR (Cardiac Pulmonary Resuscitation) with a DNR (Do Not Resuscitate), refusing hospitalization with a DNH (Do Not Hospitalize), or refusing intubation or use of a ventilator with a DNI (Do Not Intubate) are all legal and permissible medical orders. Consider creating a Physician Order for Life-Sustaining Treatment (POLST) form with your doctor. It is a portable medical order that goes with you and spells out which treatments you want and which you do not want in an end-of-life crisis. You can also refuse antibiotics if you contract a potentially life-ending condition such as pneumonia or a urinary tract infection. Hopefully, by being proactive, you can have a peaceful and dignified death in the comfort of your own home rather than hooked up to machines in an ICU. In a 1971 Kaiser Foundation survey, 70% claim they want to die in their own home. According to the Stanford School of Medicine, only about 20% do so.
2. Palliative Sedation: For some in end of life care, no medication can control intractable pain. At this point, Doctors often suggest terminal or palliative sedation. They administer sufficient drugs to put you into a deep coma until you eventually die of your condition, usually within days. It is considered ethical as long as the doctors are not intentionally trying to hasten your death. This legal fiction is called the doctrine of “double-effect” which allows doctors to treat your pain while knowing it will kill you.
3. Hospice: entering hospice ends any curative treatments, instead, your medical team provides “comfort measures” designed to ease your pain and anxiety. The goal is to minimize pain and suffering and to maximize the quality of life for the patient and family. To qualify, you have to be in the last 6 months of your terminal illness and agree to allow only symptom management. One benefit of hospice is that with support, you would likely be able to die at home.
4. Suicide: is often a last resort for many, and accomplished by violent or illegal methods. Recently, Sugar Foods, “Sweet‘N-Low” CEO, Donald Tober, age 89 and suffering from Parkinson’s Disease, jumped from the 11th floor of his luxury Park Avenue apartment. Friends surmise “he was struggling with the effects of Parkinson's” and the loss of his once active lifestyle. The aftermath of suicide by jumping off a building, using a gun, or hanging yourself (Robin William’s choice when confronted with Lewy Body Dementia) leaves your loved ones to deal with the consequences of your final act and guilt that they “should have known” what you were planning and done something to help you. Sadly, both men had the means and opportunity to explore other, less violent, and more peaceful methods to end their lives, not just for themselves, but for the loved ones they left behind.
5: Medical Aid in Dying (MAID): requires that you obtain a Doctor’s prescription and “self-administer” the life-ending drugs. It is legal in Oregon, Washington, Vermont, California, Maine Colorado, Hawaii, Washington DC, and Montana. Proponents are actively pursuing MAID in other states. www.deathwithdignity.org/learn/death-with-dignity-acts/
A mentally competent adult resident, diagnosed with a terminal illness, having 6 months or less to live, can voluntarily request a prescription to hasten their death. Pain is not the biggest reason people request MAID. Surveys consistently show it is the loss of control (autonomy) and a decrease of activities that made their life worth living, i.e., they have a diminishing quality of life. Studies also show a third of people who get the prescription opt not to take it; they are comforted by knowing it’s available if they need it.
Sidebar: this practice was accepted in Roman times. In “Memorable Doings and Sayings” by Valerius Maximus, the aid-in-dying request had to be voluntary and made by a person providing a rational reason for a quick death. There could be no mental illness and no family pressure. It also required the agreement of legal authorities and required that a physician mix the Hemlock potion that the person had to then self-administer. Two thousand years later, most of these same rules apply.
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 can't imagine trying to rob anyone else of that choice. Brittany Maynard
MAID is not a choice of death over life; it is not suicide. It is an option for those who are dying that spares them, and their witnessing family and friends, unbearable suffering and offers a controlled and peaceful ending. Britany Maynard was a 29 y/o wife diagnosed with stage-4 glioblastoma, a malignant brain tumor. To access MAID, she moved to Oregon and as her horrific symptoms (seizures) and pain progressed, she opted to take the life-ending drugs, surrounded by her loving family. Her husband Dan Diaz told me, “she fell asleep in my arms just like she did 1,000 times before, only this time, she did not wake up.” He said her death was beautiful & peaceful but most of all, MAID was her choice, enabling her to end her life on her own terms.
Unfortunately, while MAID is a peaceful choice, it offers a narrow use for many who are suffering. First, only a small few states allow it. Second, you have to be within the 6-month terminal window.
6. Voluntary Stopping Eating & Drinking (VSED) requires that you forego hydration and nutrition until you die. If you opt for this method, understand that it usually takes from three days to two weeks to die and it takes a determined person to resist thirst. VSED requires support from family or friends, paid caregivers, and or a hospice team to provide drugs for symptom management and family support. At some point, the person will likely lose capacity so a Surrogate should be named ahead of time. You need a strong will, help at your bedside, and a plan to see VSED through. (A friend’s 96 y/o mother was using VSED but it was taking so long for her to die her daughter questioned whether she was eating or drinking. She answered, “not eating, but I’m still having my 5 o’clock martini.” Not sure if that included the olive.) Witnesses describe this as a peaceful way to die. However, it is not for everyone. In her book, “On My Own”, former NPR host, Diane Rehm describes her husband’s VSED death as “excruciating and heartbreaking to watch.” For more information, finalexitnetwork.org/preparing-for-voluntarily-stopping-eating-and-drinking/
7. Final Exit Network is a nonprofit group offering «any competent person unbearably suffering an intractable medical condition, the option to die legally and peacefully.» Their mission is to: «Educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence, and defend their right to choose.» finalexitnetwork.org/FEN provides information on practical and dignified methods to hasten the inevitable and offers trained Exit Guides for education and moral support, but provides no hands-on help. The people who contact FEN are carefully screened by medical doctors and FEN will not provide guides for anyone diagnosed with a mental illness. In addition, they require family members to be aware of their loved one’s intentions. For more self-deliverance information read: Derek Humphry’s Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying finalexitnetwork.org/resources/final-exit-by-derek-humphry/
Conclusion: In life, there are lots of choices; there should also be acceptable choices for death. When you are faced with a terminal illness, there are different options in how you can achieve the best death possible. Suffering is personal and how much is tolerable is up to the individual. The methods described above require a person have mental capacity when choosing them but many also require you to have the ability to self-deliver, not easy for someone whose muscles are wasting away. A method that is right for one person may not be right or appropriate for another; you need an end-of-life plan especially when facing a terminal diagnosis. Educating yourself about the available options, talking with your loved ones about your wishes, fears, and concerns, and making the best choice based on your end-of-life goals and values will assure that you have the good ending and peaceful death that hospice professionals describe as “a soft landing.”