Death is a hard topic to face or write about with any honesty, modesty or accuracy. Five years ago, I held my best friend Jenn as she died from cancer. Her death was sad, overwhelmingly difficult and yet it was also somehow beautiful, natural, humanizing and reassuring. Her final moments were nothing like what you see on TV. Rather, they were raw and animalistic, unmediated by culture or language, almost like a reversal of birth. Since seeing her death, I haven’t felt afraid of my own death.
While her life was cut short to only 35 years, it seemed like she had a good death. She didn’t want to lose autonomy or be connected to a bunch of tubes or wires, isolated in a scary hospital. And so she actively directed her own death process. With help from her doctors, housemates and hospice, she was able to end her life totally naturally with no extraordinary medical intervention, in her own bed, in her own room, cared for by her friends and loved ones.
We’re all going to die but most people feel inhibited talking openly about death because of cultural taboos. Discussing death openly and in detail can seem negative or scary — like if we don’t talk about it, maybe it won’t happen. But with a high tech, profit-driven medical care system, our culture needs to figure out how to honestly discuss death, both so the dying can have as good a death as possible, and to stop runaway end of life costs from bankrupting the healthcare system for the living.
We need to build a culture that discusses the death process so each individual can decide for themselves when more advanced healthcare makes sense, when it is time to give up the fight, and even when it might make sense to request lethal drugs to hasten our own death to avoid prolonged suffering.
A tragic detail of the past year’s struggle over healthcare reform was the moment when a proposal to pay doctors to consult with patients about end of life care was demonized as calling for “death panels” intent on “murdering grandma”. The proposal was immediately dropped from the bill, squashing a chance to have an honest discussion about how corporate, Western medicine mis-handles death. Under Medicare, the government healthcare benefit for people over 65 and disabled people, doctors are not paid for these complex and time-consuming consultations, which can be crucial for dying patients. But doctors are paid for procedures, regardless of whether these procedures are helpful or just prolong a dying person’s suffering while providing no real benefit.
Whereas death is inevitable for all of us and a normal and natural part of life, modern health systems can sometimes treat death in a dehumanizing, mechanical way — a problem that modern technology should somehow seek to “solve.” Rather than being able to end life at one’s own pace, people are put through increasingly desperate, painful and invasive medical procedures to buy a few more days or hours.
The hopeless struggle to defeat death costs not just quality of life for patients, but accounts for a huge portion of healthcare expenditures. The five percent of Medicare patients who die each year consume about one-third of Medicare expenses, with aggressive treatments during the final month of life eating up almost a third of that sum, according to government statistics. The mainstream healthcare system is in crisis not just because millions of people lack coverage, but because the cost of coverage is increasing so rapidly. End of life care is a big part of this increase. As medical technology gets better and more complex, there are more and more ways to spend a lot of money at the end of life.
There is not an endless pool of money to pay for healthcare, especially as the population ages. Money spent on expensive end of life care that doesn’t improve a dying patient’s quality of life is not available for other care.
Cultural attitudes about whether it is always appropriate to use every available medical technology to prolong life has to somehow evolve along with technology. This requires opening space to honestly and earnestly discuss end of life issues, which is precisely what was closed down with the “death panel” rhetoric.
Learning to talk
Learning to talk about death is not about government programs or changing the medical system — although it certainly would help to make sure doctors could be paid for participating in these discussions. Learning to have these discussions is much more about changing general cultural norms. Dying people may not feel comfortable talking honestly with their families because they don’t want to scare the people they love, or themselves. Caregivers don’t want to honestly discuss death issues with the dying because they don’t want to seem like they are giving up hope. The mutual fears and inhibitions are making difficult transitions harder for everyone involved.
I can remember, as Jenn’s cancer spread throughout her body, how we both avoided talking about her impending death, even when it would have helped to be able to discuss it openly. We were lucky to finally have frank discussions towards the very end, but it was never easy. Her doctor greatly helped in the process by telling Jenn at a particular point that there were no more realistic treatment options and that her focus should switch to palliative care — care designed to manage pain rather than fight her cancer. Jenn was so used to fighting that I think she would have tried more long-shot treatments right up until the end had her doctor not given her permission to pull back and change her focus from fighting to dying.
While it would be easy to confuse this transition with giving up, I think of those last few weeks of Jenn’s life as particularly meaningful for her. We began visiting outdoor places she loved and scheduling visits with her friends so they could say goodbye. She wrote a will to provide for her cat. We talked about what she wanted done with her body. She gave away her camping gear and materials she used as a high school teacher — symbolically wrapping up loose ends. Jenn could have missed some of these opportunities to wind up her life had she kept on fighting and trying more treatments until the very end.
At a housemeeting a week before she died, Jenn discussed her wishes regarding her care and the role hospice would play in permitting her to die at home. She asked housemates not to panic and call an ambulance when she got sicker because she didn’t want to be taken to a hospital or connected to tubes or wires. She signed a do-not-resuscitate order so that if paramedics were called, they would not take extraordinary measures to revive her. Her doctor prescribed pain medication, anti-anxiety pills and other drugs to limit her suffering as much as possible. An acupuncturist made home visits to reduce annoying hiccups and itching. Most of all, we scheduled her friends to sit with her 24 hours a day during her last 5 days.
While there was no way to avoid all of the suffering that one’s body goes through as it shuts down, all of this planning, communication and support helped Jenn depart in a fairly humane fashion.
What can we do to make these difficult conversations easier and more common, so more people can have humane deaths surrounded by their friends? The process around Jenn’s death was easier because the medical establishment in Berkeley was experienced and supportive of alternatives, because of the type of person Jenn was, and because her community was ready to participate.
I can imagine things being a lot more difficult when children are trying to relate to elderly parents across cultural divides, when the healthcare system is less supportive, and when the person dying doesn’t get information about alternative options or doesn’t feel comfortable asking if there is another way.
I don’t have any brilliant ideas about how to change this dynamic other than trying to stimulate discussion about death and dying.
I think it can help to talk about end of life issues with your friends and loved ones before there is a crisis even though this is far from easy. One tiny part of opening discussion may be getting people to sign living wills. A living will is a document you can sign instructing your loved ones what you want done if you become seriously ill or injured and can no longer communicate your wishes about medical care. They usually appoint one or more persons to make decisions on your behalf. A person who signs a living will may, for instance, request that their body not be kept alive artificially when there is no hope of recovery. They permit people to limit the excesses of the high tech healthcare system.
When you sign a living will, you have an opportunity to talk with the people you are appointing to make medical decisions on your behalf about your wishes and your values around end of life issues and how you want to use the healthcare system. This can stimulate discussion and cultural development all around. I’ve put a sample living will at the end of this article and on-line in case you want to try this.
Death With Dignity
Even more taboo than openly discussing end of life issues is the movement to permit terminally ill patients to obtain lethal drugs to hasten their deaths. This allows terminally ill people to have some measure of control over their deaths. I see this as lying along a continuum of contemporary responses to the end of life — from using high tech medical care to aggressively extend life, to declining care, to using palliative care and hospice to control suffering at the end of life, and extending to a patient ending their life before they would otherwise die naturally to avoid prolonged suffering. The common goal is self-determination and empowering each person to decide what is right for them. No one path is right for everyone so the key is opening a variety of options.
In 1997, Oregon passed the Death with Dignity Act, the first law in the US to permit doctors to legally prescribe lethal drugs to terminally ill patients who request them. The law prevailed over court challenges and Washington State has since passed a similar law. These types of laws are more common in Europe than in the US.
Under the Oregon law, a patient has to be well enough to self-administer the lethal drugs. Patients have to make repeated requests to their doctors over a period of time, orally and in writing. The doctor and another physician have to fill out forms diagnosing a terminal illness with six months or less to live and finding that the patient is mentally competent to make and communicate health care decisions. The doctor has to advise the patient about alternatives, including palliative care, hospice and pain management options. And the doctor has to ask the patient to notify next of kin about the prescription. There are forms that all parties have to fill out and file on the Oregon Department of Human Services website and it is impressive to see all the safeguards built into the law.
Since its passage, Oregon has kept detailed records about how people have used the law, which are reported annually. From 1997 to 2009, 460 Oregonians have taken their lives using medicine prescribed under the Act. Not everyone who requests and gets lethal drugs actually takes them. Just having options can be helpful and comforting to many people.
In 2009, there were 95 prescriptions — 53 patients took the pills and died, 30 died of their illness, and 12 were still alive at the end of 2009. 98 percent of the patients who took the drugs died at home. On forms asking doctors to assess the reasons patients requested the drugs, the most frequently mentioned end-of-life concerns were: loss of autonomy (96.6%), loss of dignity (91.5%), and decreasing ability to participate in activities that made life enjoyable (86.4%).
I find this law important and interesting — despite the hyper-state orientation of forms and permissions — because of the way it opens up end of life options and dialog. The reasons patients request lethal drugs is especially interesting. These people haven’t given up on life — rather, they are empowered and engaged in defining for themselves how they want to live, including when and how they want to die. This seems to me the polar opposite of people caught up in a medical system intent on delivering procedures disconnected from the potential costs of benefits to patients or society. While not everyone will want or use such options, pushing to extend them widens the space to grapple with these issues.
While death is a natural part of life, the healthcare industry and cultural norms that try to hide death have limited self-determination at the end of life. Just as many people are battling the inhumane corporate machine that is killing the earth and dominating most aspects of human life, we need to struggle so that the healthcare industry serves human needs, not corporate greed, at the end of life. That means fighting for freedom from suffering and empowering each person to decide how much to use, or decline to use, high tech medical procedures at the end of life.
For many people, having a good death may mean one connected to community, not machines. With help from friends as well as caring medical professionals, we can organize our own do-it-yourself deaths.
Promoting self-determination at the end of life doesn’t mean cutting off money to people who want to use healthcare to the max — it means giving everyone more options. There is a lot of evidence that the more open the dialog, and the more options available, the cheaper overall end of life healthcare will ultimately be, because many empowered people will not request every last procedure. But the main reason to struggle for a more humanistic culture around end of life issues is to avoid suffering, not just to save money. A lot of the fancy high tech healthcare procedures are causing, rather than preventing, human misery. By engaging in hard discussions about death and learning to think about death as a part of life, rather than as a terrifying unspeakable topic, we can help build a culture that supports individuals where it is okay to ask for help, as well as decline corporate care.
I wish to thank the excellent doctors and other medical staff at Herrick Cancer Center who cared for Jenn and exemplified the best of what the medical system can offer people.
For information on Oregon’s Death with Dignity Act, check out www.deathwithdignity.org.
Living Will and Appointment of Attorney for Health Care Decisions
To my family, my friends, my physicians, my lawyer and all others whom it may concern:
I ________ being of sound mind, emotionally and mentally competent, and understanding the full import of this directive, make this statement of my wishes and instructions concerning medical treatment.
I intend this document to be legally binding. I am a resident of ____. I direct my physicians, other health care providers, my family and any surrogate designated by me or appointed by a Court, to carry out the wishes stated in this document. If I become unable, by reason of physical or mental incapacity, to make decisions about my medical care, this document provides the guidance and authority needed to make any and all such decisions.
If at any time I have an incurable injury, disease or illness certified to be a terminal condition by two physicians, one of which is the attending physician, and where the application of life-sustaining procedures would serve only to artificially prolong the moment of my death and where my physician determines that my death is imminent whether or not life-sustaining procedures are utilized, I direct that my life shall not be artificially prolonged and that life prolonging procedures should be withheld or withdrawn, and that I be permitted to die naturally.
In addition to the above, I do not want my life to be prolonged if I have become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness.
Finally, I do not want my life to be prolonged if I have an incurable and irreversible condition and life-prolonging treatment imposes risks and burdens of treatment that outweighs the expected benefits, even if my death is not immediately imminent.
In the absence of my ability to give directions regarding the use of life-sustaining procedures, it is my intention that this directive shall be honored by my family and physicians as the final expression of my legal right to refuse medical or surgical treatment and accept the consequences from such refusal. If artificial life-sustaining means have been commenced, they should be stopped. All care necessary to keep me comfortable and free from pain should be given, even if pain-relieving medications may hasten my death.
To effect my wishes, I designate ____residing at ___ or if he or she shall for any reason fail to act, I ____residing at ___ (in that order) as my health care agent/surrogate, that is, my attorney-in-fact regarding any and all health care decisions to be made for me, including the decision to refuse life-sustaining treatment, if I am unable to make such decisions myself. My agent/surrogate’s authority shall become effective when my primary physician determines that I am unable to make my own health care decisions. This power shall remain effective during and not be affected by my subsequent illness, disability or incapacity. My surrogate shall have authority to interpret this document, and shall make decisions about my health care as specified in my instructions, or, if or when my wishes are not clear, as the surrogate believes to be in my best interests. I release and hold harmless my health care surrogate from any and all claims whatsoever arising from decisions made in good faith in the exercise of this power.
[Sign and date, and have witnessed by two un-related persons who are over 18, not named in the living will, and who won't receive any property upon your death. They should confirm in writing near their signatures that you are of sound mind at the time you sign.]