This piece is co-written by Patrice Feinstein and Tara Sonenshine. Feinstein is a grief counselor who writes about end-of-life issues.
Why do we need to talk about dying? It will happen to all of us -- at some point, at some pace, and in some place.
We all have preconceived notions about the end of life. For some, it is the peaceful picture of dying at home with loved ones gathered at bedside. For others, it is falling asleep and never awakening. Some worry they will be hooked up to machines in a near vegetative condition for months on end.
For most -- death isn't something to think about or worry about at all. We are living longer and stronger, with more cures for diseases, more options for long-term care, and insurance policies to address financial concerns. So why discuss it further?
In a recent article about death and dying, we wrote about the importance of conversation around these issues, and the difficulty in finding acceptable words amidst the confusion over a myriad of terms and phrases. That has led to a deepening dialogue about where, exactly, a terminally-ill person might find themselves at the time of death -- literally and figuratively -- and what kinds of options are available in different settings if someone wants to hasten death.
While many believe that most of us die at home, the truth is, according to the Pew Charitable Trusts, quite different. The vast majority of Americans express a preference for dying at home, but 70 per cent end up in some kind of institution -- either assisted-living, a nursing home, or a hospital. Most of us don't think much about where we might end up immediately before death, but the site where we receive care has its own rules to follow: and they may not follow our instructions if it contradicts theirs!! Oftentimes, an individual patient's wishes are trampled upon or ignored because each of these institutions are required to follow procedures to pursue life-saving techniques at all cost, or at the other extreme are precluded from allowing patients to self-administer their prescribed medications.
The problem is not entirely new. An Institute of Medicine 2011 study found that "nursing homes face a dilemma in providing care near the end of life. Although nursing homes typically are a frail elderly person's final residence, federal and state agencies and national accreditation entities hold them to standards that can be more suitable to life-prolonging care than to addressing quality of life and comfort near the end of life..." Even home health aides must, for example, call 911 if they encounter a non-responsive patient regardless of whether or not the patient has made it clear to loved ones that they wish to stop medications or nutrition.
Some states will not permit hospice services to be provided in assisted living facilities at all. In many areas, assisted living centers will not allow medications such as morphine on the premises, even though these drugs can be routinely distributed to patients receiving hospice services in their homes.
For those living with progressive conditions associated with dementia, Alzheimer's, Parkinson's Disease, and other neurological conditions that impair thinking and mobility -- conditions arise that can make it almost impossible to determine and record the desires of people after they have entered a particular phase of their condition. That alone makes the case for having end-of-life conversations in earlier stages of the disease before it progresses.
In a recent book, radio journalist Diane Rehm writes about the experiences of her husband, John Rehm, who found himself up against the regulations of an assisted-living facility and therefore unable to carry out his own physical wishes to die, and literally had to refuse food, water, and medicine, to induce a coma. Hardly a humane option.
Relinquishing autonomy is hard. But 250 million Americans live in states without Death with Dignity Laws and must relinquish much of their autonomy over decisions regarding their end of life wishes. If they no longer wish to stay alive and continue to fight to overcome the known course and likely timing of their terminal condition, they instead are subject to the regulations governing the facility in which they reside concerning caring for a patient and physicians orders as to what should be done. Even if they reside at home, there can be legal and other obstacles for family members who try to aid in carrying out their loved ones wishes.
Pace and place matter. Those who qualify as "terminally ill" and mentally competent adults should have the option that 50 million Americans who reside in California, Oregon, Washington, Vermont and Montana have to exercise the same freedom about how they live as to how they die. Granting these rights to the rest of America would add another voluntary option to the continuum of end-of-life care in addition to palliative care and hospice services.
In the end, at the end, most of us want dignity, control, and peace of mind during the final days with family and loved ones. We want protections so that we can remain the driving force in end-of-life care discussions.
Sonenshine is former under secretary of state for public diplomacy and public affairs and lectures at George Washington University's School of Media and Public Affairs. Feinstein is a grief support counselor who has listened to survivors lament the final stages of their loved ones' lives. She was formerly the associate administrator at the Department of Health and Human Services.