End-of-Life Options for Hastening Your Death
By Chris Palmer, Hemlock Society of San Diego Vice President
Author of Achieving a Good Death: A Practical Guide to the End of Life
Dying people face the prospect of prolonging life as long as possible (and perhaps experiencing intolerable suffering and deterioration) or finding ways to die peacefully and gracefully.
We are now dealing with a controversial issue: the right of an individual to choose how and when to end their life and how to have access to safe, caring, and legal means of doing so.
The “right to choose death” means that each individual should have the right to choose a peaceful, dignified death consistent with their values and to receive assistance in pursuing this right.
People near death should be entitled to terminate their lives intentionally and deliberately, with dignity and support. The decision to hasten death is strictly an individual choice. HSSD favors giving people options at the end of life and letting them freely choose how they want to die.
Discussions about this are usually held with people with a serious progressive illness that may or may not be terminal, but whose life has deteriorated so severely that quality of life has become (or soon will become) unacceptable and unbearable.
Whatever individuals want for themselves at the end of their lives should be honored and respected. Mentally capable people who feel that a terminal disease has so destroyed the quality of their lives that they would rather die than go on suffering are entitled to be listened to and respected.
Suffering is personal and subjective. How much is bearable is up to the patient and no one else.
Even with advance directives, more people than ever spend their last days in sterile facilities, incoherent, sustained by ineffective pain medications, and tethered to machines that keep them alive but not fully living.
Dying people ought to be allowed to die peacefully in their sleep with a medication prescribed for that purpose instead of suffering pain, agitation, delirium, air hunger, nausea, and other symptoms, which will only get more severe as time goes on.
Terminally ill people should be able to use drugs and other means (such as voluntarily stopping eating and drinking) to access a peaceful death. It’s so much better to give people these options than to force suffering individuals to use a gun or another violent means to end their anguish.
An intentional death gives the dying person peace of mind, a sense of agency, the chance to die at home, the end of unnecessary pain and suffering, and reduced trauma for loved ones.
A full and meaningful life ending with a sense of completeness and few regrets provides a profound lesson in living and dying well.
The family has a chance to gather around the dying person’s bedside. Sharing laughter, memories, and healing words can create a sacred and memorable event.
People should be free to shape and design how their lives will be completed when faced with a future riven with pain, suffering, and gross indignities.
Causing our own death is not a criminal act and can, under certain circumstances, be a profoundly wise and loving thing to do, especially when one’s life is so severely diminished that living is worse than death.
If a cherished dog is dying and in pain, the owners ask a vet to end her life painlessly and peacefully. This action is widely viewed as morally decent and merciful. No humane person would let their dog suffer without euthanizing it.
Why are humans at the end of life treated worse than dogs? Advocates like HSSD for the right to choose death like to use the slogan, “I would rather die like a dog.” They mean, “Treat me mercifully, as we treat our beloved pets.”
The right to determine your own manner and time of death should be universal. The horrors of dementia, cancer, heart failure, and other diseases can lead people to intentionally choose a nonviolent way of dying.
Here are the various ways of hastening death and shortening the period of intense and intractable suffering caused by illness and disease:
- Withholding and withdrawing unwanted life-sustaining treatments
- Voluntarily stopping eating and drinking (VSED)
- Palliative or terminal sedation (what used to be called “barbiturate sedation”)
- Lethal medication, including medical aid in dying (MAID), and the Swiss option (Voluntary Assisted Dying or VAD)
- Final Exit Network Exit Guide Program
Withholding and Withdrawing Unwanted Life-Sustaining Treatments
People facing declining health or dementia who do not want their lives artificially extended can work with their doctors to customize their health-care choices away from extending life.
Life-sustaining interventions that can be withheld or withdrawn include treatments and tests, such as mechanical ventilation, intravenous hydration, a feeding tube, cardiopulmonary resuscitation (CPR), and antibiotics.
They can be legally declined or stopped at any time, even if they prolong life. This decision can be made by patients or by their health-care agents.
Competent adults (or their health-care agents) can refuse any and all treatment while still being entitled to palliative care to keep them comfortable. There is no guarantee that this will hasten death, but it’s likely.
Medical providers tend to be hardwired toward testing and treating, so making these sorts of changes will be trickier than it might sound, and one must be firm in pursuing them.
If people with dementia decide to permit their dementia to advance beyond the point of their ability to refuse treatment, then they will want to tell their loved ones and doctors, in the dementia provision of their advance directive, to reject or withhold treatment when “the line” is reached.
Voluntarily Stopping Eating and Drinking (VSED)
Voluntarily stopping eating and drinking (VSED) is a practice in which a very ill patient, facing devastating decline, intentionally hastens death by stopping the intake of all food and fluids—that is, refusing food and water (fasting) until death.
VSED is available to everyone everywhere (unlike medical aid in dying) and places the dying process in the patient’s control. For a person with a terminal condition near the end of life, deciding not to eat and drink is an ethical, legal, effective, and practical way to hasten death. It’s a well-understood and socially accepted method of hastening death.
VSED is legally permitted in jurisdictions where medical aid in dying is not. Unlike aid in dying, it’s not limited to terminal illnesses or to those with current decision-making capacity.
VSED is a caring and compassionate option for accelerating death that respects personal choice. VSED is typically peaceful when accompanied by adequate palliative care and caregiver support.
VSED provides an opportunity to achieve a relatively peaceful, personally controlled death for patients seeking an escape from the prospect of unacceptable suffering or deterioration in their present condition or foreseeable future. Palliative care can manage symptoms like dry mouth or agitation.
Dying by dehydration and starvation for a healthy person is agonizing and terrifying. But for very ill people near the end of their lives who are resolved to end life on their own terms, the process of dying by VSED is entirely different, provided they work with an experienced doctor, medical team, or hospice.
As death approaches, bodily changes often take away the appetite, so VSED aligns with a natural death but should be medically managed to minimize discomfort.
People who choose this option should work with hospice or a medical team. Doctors say that hunger or thirst pains can be minimized for dying people near the end of their lives, especially in hospice care, where narcotics and sedatives can reduce discomfort.
Many people who do not qualify for medical aid in dying may want to consider VSED as an alternative way of hastening their death. For some people, the possibility of using VSED in the future may permit them to continue living fully without the debilitating fear that they will get cornered and trapped with dementia or another horrifying disease and have no means of escape.
Unlike aid in dying, a doctor’s consent is unnecessary to start VSED, and there are no regulatory hurdles to slow a patient down. It’s legally permitted in every state in the United States.
If a mentally competent patient refuses nutrition or hydration, that is their prerogative. VSED does require grit and determination.
Death usually occurs within two weeks, assuming the person diligently avoids drinking. However, death can occur within a few days for someone already weakened. It can be longer than two weeks for those who are strong or take small amounts of liquid.
Unlike a chosen death via medical aid in dying, VSED provides a gradual transition for the dying individual and family members. Friends can visit to say goodbye.
Many other societies perceive stopping eating and drinking as a signal that the patient is dying, not as a cause of death. They see inserting a feeding tube in a frail, dying patient as inappropriate.
People tend to stop eating and drinking as they approach death, and their organs start faltering and shutting down. VSED ideally should be supported by hospice, and the dementia must be early enough for the person to be mentally capable of remembering the choice to stop eating and drinking.
Individuals should make a video in their most lucid time to use as a reminder of their intentions.
HSSD and other end-of-life leaders are working to create and legally support an advance directive with which competent individuals can specify that their future incompetent self (when they have advanced dementia) can use VSED to hasten their death.
Terminal (or Palliative) Sedation
Even strong medication cannot control severe and relentless pain for some patients. If the suffering from pain, nausea, delirium, agitation, shortness of breath, and other end-of-life miseries becomes too intense and overpowering as death approaches, doctors can sedate a patient with medications to make the patient unconscious. In this calm and comatose state, the patient can die peacefully.
Medical providers call this terminal sedation (other names are palliative sedation, total sedation, and continuous deep sedation). Terminal sedation is consistent with the Hippocratic oath to do no harm because it’s harmful to patients to allow them to suffer without relief.
Doctors administer enough drugs to make patients unconscious until they eventually die of their disease, usually within days. It’s best done with the help of hospice care to ensure the patients and their loved ones are as well supported as possible.
Legal everywhere, terminal sedation prevents further physical and psychological suffering and can hasten the dying process. Many people consider it a humane option for a peaceful death and needs to be more widely understood.
Terminal sedation is considered ethical as long as doctors are not intentionally trying to hasten death. This legal legerdemain (the doctrine of “double effect”) allows physicians to treat patients’ pain while knowing it will likely kill them.
The creed or moral principle of “double effect” (first formulated by the Catholic theologian St. Thomas Aquinas in the Middle Ages) holds doctors innocent of murder if they deliver powerful drugs (like opiates) to dying patients to relieve their unbearable pain and suffering, and those drugs, simultaneously and as a side effect, hasten death. An action is judged by its primary purpose or intention.
Terminal sedation is practiced by medical providers everywhere and is perfectly legal. The double-effect ethical principle allows for unintended harm, including a patient’s death, if the doctor is well-intended and striving toward an obvious good—the relief of suffering.
The distinction between letting terminally ill people die and intentionally ending their lives can get opaque. A precept of palliative care is not to deliberately hasten death, but this precept is soft and mushy in practice.
Medical Aid in Dying
Medical aid in dying (MAID) is when a doctor writes a lethal drug prescription for a terminally ill patient who self-administers the drug and dies. It is patient-driven, not doctor-driven.
The patient must have a prognosis of six months or less to live, have decision-making capacity (i.e., be mentally capable), and be able to take the medication themselves if and when they decide to.
In states where aid in dying is authorized and legal, patients can exit life with an intentional, planned death to escape agonizing, relentless deterioration at the end of life.
MAID allows terminally ill adults to request and receive a prescription for medication, which they may choose to take themselves, by mouth, by a tube inserted through the skin into the stomach wall, or rectally.
After taking the fast-acting drugs, patients fall asleep within a few minutes, drift into a deep coma, and then segue peacefully and painlessly into death, typically within a couple of hours.
Strong protections are built into MAID, but the precise protections vary by state. Typically, the patient must request MAID three times, including once in writing, with two witnesses. In addition, two medical providers must certify that the person meets the eligibility criteria.
Such protections are needed because some families try to hasten death for unacceptable and immoral reasons. Perhaps the dying person is exhausting the family’s savings, was violent and abusive, or is simply an enervating and excessive burden. Or maybe family members seek their inheritance, which they can’t access while the patient is alive.
MAID is a polarizing and fraught issue. Critics of MAID claim that it denies God’s will, cuts life short, violates the doctor’s pledge to do no harm, promotes suicide, and makes euthanasia more acceptable in society.
In traditional Christian and Jewish thought, the body belongs to God, so ending one’s life is not considered within the scope of a person’s authority. Those opposed to MAID laws, including the Roman Catholic Church, feel that any right to die would naturally devolve into coercive pressure to die on the disabled, enfeebled, senile, and debilitated.
There is no evidence that this is happening. While MAID has been in effect in Oregon since 1997, there has never been a credible, documented case of abuse. There is no evidence of a “slippery slope” in which criteria are relaxed, or patients coerced to participate, and there is no evidence that MAID targets minorities or the disabled.
Twelve US jurisdictions, beginning with Oregon in 1997, and including Washington, DC, currently authorize MAID. The MAID laws in those jurisdictions are among the most restrictive in countries with such laws. That hasn’t stopped opposition from some religious and right-to-life groups.
The Catholic Church (with Mormons and evangelicals not far behind) has invested large amounts of money and resources to oppose the right to choose one’s end of life because of the belief that only God should determine when and how one dies.
Many people feel, like HSSD does, that MAID is a fundamental human right. They believe MAID gives a dying person agency, autonomy, and choices. It offers a path to cease suffering from dependency, pain, existential despair, indignities, or whatever else is causing the dying person to feel distressed and wretched.
For many dying people, having the option of ending their lives if they want to is itself a relief. About a third of the patients prescribed fatal drugs never use them, but having them available gives patients a gratifying sense of control and agency over their lives.
Supporters of MAID don’t believe it violates the Hippocratic oath to “do no harm.” Harm is prolonging intense suffering for terminally ill people at the end of their lives, and MAID is designed to end such suffering.
It’s rational and wise for patients to choose death rather than experience the misery and degradation that their disease will thrust on them. Respecting patients has as much to do with supporting their dignity, autonomy, and relief of suffering as it does with maximizing the number of days they keep breathing.
Very few people die by MAID, only about three of every one thousand deaths. For a list of states and jurisdictions where MAID is legal, go to deathwithdignity.org/states. MAID is covered by most private insurance and Medicaid in several states (California, Hawaii, New Mexico, and Oregon). While some patients have to pay for the fatal drugs out of pocket (and they are expensive), many people are covered.
Another MAID option is the Swiss option that involves nonprofits like Dignitas, Pegasos, and Athanasios. If you are interested in this option, HSSD has experts on its board who can help you.
Final Exit Network (FEN) and the Right to Die
FEN is a nonprofit organization working to provide, like HSSD, choice in dying. FEN’s Exit Guide Program has trained volunteers who educate people on how to comfortably and safely end their lives.
The guides simply provide comfort and diminish isolation and loneliness. They offer information and support to people in their homes at no charge. They do not provide tangible physical assistance in death and do not provide the means to bring about death. Anyone working with a FEN Exit Guide must be able to procure, assemble, and operate the equipment needed without help.
FEN keeps abreast of research on safe and reliable methods of self-deliverance so that people can choose to end their lives comfortably at home without having to depend on MAID or the medical system. (Self-deliverance means acting on one’s own without a physician assisting.)
FEN, like HSSD, supports the idea that any competent person suffering from an unendurable and intractable medical condition should have the option of a legal, dignified, and peaceful death. A person can qualify for FEN services without necessarily being terminally ill. For example, FEN works with individuals who are in early-stage dementia and are still mentally capable.
FEN’s Medical Review Committee, composed of physicians and health-care professionals, carefully screens applicants to FEN’s Exit Guide Program. The program does not accept applications based on mental illness. In addition, the committee requires family members to be aware of their loved one’s intentions.
Operating under the protection of the First Amendment, FEN exit guides provide nothing but information, that is, speech. Merely advising a patient about how to hasten their death does not constitute ‘assisting’ a suicide within the meaning of state felony statutes. So, the conduct of FEN exit guides is generally not illegal, though a few states have construed the word ‘assist’ to cover mere speech.”
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Arguably, the greatest of our civil liberties is the right to govern our lives, including the right to choose when and how to die. Those patients who intentionally hasten their death deserve understanding, compassion, support, and even admiration.
I’m not recommending that all patients with debilitating terminal illnesses hasten their deaths through VSED, MAID, or other means. But those who choose to go that route should not be condemned.
It would be facile and wrong to claim that dying patients who want to hasten their deaths are clinically depressed. Most are just rational and realistic. They know a lingering, painful, inhumane death is best avoided.