HOW DO I AVOID THE OLD FOLKS’ HOME?

HOW DO I AVOID THE OLD FOLKS’ HOME?

From the time I was a small child, I visited grandparents (perhaps great grandparents) in facilities where old people got housed when they got too difficult, too infirm, too crazy, or simply too much trouble to deal with. I remember a particular visit when I went with a friend and her mother to see her grandmother. The grandmother drooled a lot, smelled bad, and repeatedly asked the same questions over and over again. We forced ourselves to stay an hour. I have no memory of how old she was, but clearly she appeared to be about 120 to me. My friend and I mostly played outside, and held our noses, never imagining that this could possibly happen to us. We were only ten years old, and we would be young forever. “Roughly one million Americans reside in senior care facilities. This number is expected to almost double by 2030.”

Today I am 60 years old. I have visited a proliferation of assisted living and nursing homes to the extent that I simply never want to return. I’ve watched and helped as my spouse and friends’ parents declined and were checked in, like an old library book no one wants to read any longer but god forbid that we burn it. Just sit it on a shelf, clean it up, open the pages to make it feel alive, and put it away again. Of course, tending to a human takes much more. Unlike an avid reader, the elderly human requires someone to feed her, change her diaper, get her up to walk, take her to the doctor, and administer the never ending amount of pharmaceuticals which we give in this country to people who are in their 80’s and 90’s. I don’t mean to suggest that these people haven’t earned their right to live. They have. But do we have the right to keep them alive at all means? Is there something about dignity of life that we may have forgotten in the process?

As I began to wonder just how I wanted my ultimate demise to come, I came across some sobering facts. In America, ““Death is not what it used to be,” the Approaching Death report observed in 1997. “In the United States, death at home in the care of family has been widely superseded by an institutional, professional, and technological process of dying” (IOM, 1997, p. 33). Although the proportion of people who die in hospitals has declined in recent years, the last few months of life are characterized by frequent hospital and intensive care stays; as noted, enrollment in hospice often occupies just the last few days of life. Among Medicare fee-for-service beneficiaries, the percentage who died in acute care hospitals declined from 33 percent in 2000 to 25 percent in 2009 (Teno et al., 2013; Goodman et al., 2013). Also in 2009, a third of Medicare deaths occurred in private residences, 28 percent in nursing homes, and approximately 14 percent elsewhere (Teno et al., 2013). Death in an institution being cared for whoever was hired for that shift is not exactly what I had in mind. What did I have in mind? No idea. Few really want to think this through, and I am no exception.

More research brought me this: ““Most Americans want to die at home. But the sad truth is many don’t, because they fail to do advance care planning with their families and their physicians,” said Coombs Lee, who coauthored the nation’s first death-with-dignity law in Oregon. “Oregon’s death-with-dignity law has dramatically improved end-of-life care in the state. We think that’s because people in Oregon are more likely to think through their end-of-life wishes when they have real choices. And studies show that early admission to hospice care can extend the patient’s life and improve the quality.” This definitely sounds much more appealing, and my several experiences with hospice (through the end of life process with others) have proven they are the go-to people at that moment. Still, we are dealing mostly with institutional death. Why has it become like that?

The dedicated activist, Rev. Dr. Ignacio Castuera, a Mexican-American civil and human rights leader, promotes personal choice. He “has been a strong voice in the movement to legalize the medical practice of aid in dying for terminally ill adults. Five states currently allow it: Oregon, Washington, Montana, Vermont and New Mexico.” I don’t live in any of those states. So I suppose what I would have to do is go rent a room, hopefully take a few friends, and end my journey far away from my where I reside. That still doesn’t seem like much of an option.

When it comes to African Americans, which I’m not, the conclusion seems to be, “African American end-of-life choices are influenced by knowledge of and access to services as well as by shared cultural beliefs in the role of family and others in decision-making, mistrust toward the health care system, and the importance of spirituality.” I’m not sure I have any more trust for the health care system. Seek first not to harm? I don’t want to live forever. I don’t want their job to pump me full of pills just so they can say they are doing their job. Additionally, the cultural distinctions extend to the following, “ Many African and Japanese physicians, when discussing cancer with patients or family members, choose terms such as “growth,” “mass,” “blood disease,” or “unclean tissue,”15 rather than specifically describing a potentially terminal condition. In Hispanic, Chinese, and Pakistani communities, family members actively protect terminally ill patients from knowledge of their condition. In the United States, this protection may include deliberately not translating diagnosis and treatment information to patients.”

Moreover, we discover this issue when relying on institutional care: “In one sense, 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. As a result, “evidence indicates that nursing homes undertreat pain, especially in cognitively impaired and minority residents” (IOM, 2011, p. 141).

Not the least of my concern is the cost. “Approximately seven out of every ten people who live in an ALF must depend on their personal wealth or that of their family to pay for their services. For this reason, the majority of individuals who reside in retirement communities are those living above the median wage for their regions.” Medicaid is the secondary payment for the facility. “The average cost for a private one-bedroom apartment in an assisted living residence is $3,022 per month, according to research compiled by several nonprofit senior living organizations, including the Assisted Living Federation of America (2009 Overview of Assisted Living).” “On average, the cost to live in an ALF ranges from $3,000 to $4,500 a month.6 Because of the hefty price tag, only individuals with a fairly large disposable income are typically able to afford these services.” There are veteran’s subsidies – for both the vet and the spouse of the vet. Be sure you check into that if you qualify because no one is going to share that information with you. I ran a quick request online to see if I could get local pricing. No pricing listed, and within 30 seconds, I had a phone call. This is big business, and the competition must be fierce. More research informs that you must be clear about what you are getting for the price. Some packages include only 2 meals a day. In Chicago, “Care costs will depend on the amount of time spent helping the senior.”

Depending on the state (which exercises the most control on Assisted Living homes in comparison to federal control), the profit margins may be higher. In Indiana, “The partnerships allow both hospitals and nursing homes to draw down extra federal money, which appears to give nursing homes at least 2 percent on top of their average profit margin of 2 percent, according to nursing home officials and the publicly disclosed details of one partnership.”

Okay. Doesn’t sound like the perfect storm here, huh? What other choices are available in other countries? While in the US it is considered and respectful to inform a patient of a terminal illness that is not necessarily true elsewhere in the world. “In contrast to the emphasis on “truth telling” in the United States, it is not uncommon for health care professionals outside the United States to conceal serious diagnoses from patients, because disclosure of serious illness may be viewed as disrespectful, impolite, or even harmful to the patient. Similarly, with regard to decision making, the U.S. emphasis on patient autonomy may contrast with preferences for more family-based, physician-based, or shared physician- and family-based decision making among some cultures. Finally, survey data suggest lower rates of advance directive completion among patients of specific ethnic backgrounds, which may reflect distrust of the U.S. health care system, current health care disparities, cultural perspectives on death and suffering, and family dynamics. By paying attention to the patient’s values, spirituality, and relationship dynamics, the family physician can elicit and follow cultural preferences.”

Although we still are more caring than the UK, they are on the way to improvement. “This issue brief addresses England’s End of Life Care Strategy—a 10-year plan that was adopted in 2008 by the country’s Department of Health and National Health Service. England’s adoption of the Strategy provides an opportunity to see how improvements in end-of-life care are being pursued in a health system that was already, in international terms, doing relatively well. The author discusses why the strategy came about, what it consists of, how it is being implemented, and what is known about its impact. This account is based both on published sources and on some 15 interviews in London in early 2010 with individuals who have been deeply involved either with the Strategy and its implementation or with end-of-life and palliative care.” Additionally, “there was considerable evidence in the mid-2000s that end-of-life care was inadequate in England, despite the excellent models that existed there—particularly in the hospices that had been introduced as charitable organizations several decades earlier. The majority of deaths in England occurred in hospitals, even though surveys indicated that few people stated a preference for hospitals as the places where they would wish to die (50%–70% said they would prefer to die at home).”

In Canada, you can view a webinar on what you thought you knew about palliative care (http://www.qelccc.ca/projects-and-resources/webinars.aspx). Perhaps what surprises me most about all of this is simply how much information is out there because the boomers are aging. Prior to this, we went home, went to bed, surrounded by our families, and passed on into the next phase. This has become a multi-billion dollar industry. We need walkers, canes, homes, housekeepers, food, someone to wash our clothes, depends, beds, people to move us in as the elderly we are and people to take us out as the dead we will be. We need vans, doctors, activity planners, cooks, and people to clean up the uneaten and spilled food, hair dressers, and on and on. I haven’t even touched on the pharmaceutical industry.

What is the situation and costs for drugs in these centers? “Routine medication orders in nursing homes increased by 14 percent from 1997 to 2000.” “A 2000 study of nursing facilities revealed that individual nursing home residents receive an average of 6.7 routine prescription medications per day and 2.7 additional medications on an “as needed” basis.5 The most commonly prescribed medications, according to an independent survey, are gastrointestinal agents (including laxatives, enemas, and acid secretion reducers), analgesics (including acetaminophen and aspirin), cardiovascular medications (including Digoxin, diuretics, and nitrates), vitamins and supplements (including multivitamins and potassium), and psychoactive medications (including sedatives and hypnotics, antipsychotics, and antidepressants).” None of this is comforting to me.

Years ago, I lived in Charlotte, NC. I remember going back one day, and thinking, no one planned this city. The roads sprawled where they went, and there was no accountability toward what the curves should be, where the neighborhoods connected, and how the town grew. With the addition of several major interstates, much of this has changed. But try to get down Independence Blvd. without having to constantly think about where you are going, and you will get my visual. This is how I feel about Assisted Living and Pharmaceuticals. No one (at least none that I can find) has given clear thought to how we got here and where we are headed.

I have been told (but I can’t find data to support it) that in Panama, once a person realizes they have lived long enough, they choose a friend (perhaps an incorrect label) to walk them into the forest. The friend leaves them there. Two weeks later, the tribe returns to claim the body. It all feels so natural (likely terrifying at the time of death). But it’s full of emotion. It’s actually full of life. It isn’t a long slow demise into the end of one’s life, which is determined by the doctors and the drugs in America. Perhaps I’ll opt for Panama. Much like the African Americans, I have little faith in our system.

If you disagree, PLEASE share – and share why.

Do not go gentle into that good night

Dylan Thomas, 1914 – 1953
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.