By Rebecca Gagne-Henderson PhD, APRN, ACHPN, FNP
Wherever we call home, most of us long to be there. No matter the condition of the floors, or the quality of the curtains–perhaps no curtains, that is the place we want to be at the end of the day. But what about at the end of our lives?
Home may look different from the traditional images in our mind’s eye. In the 90s I had a hospice patient whose address changed every fortnight. She would call me and give me her new location. The law in Los Angeles was that you could not park a vehicle for more than 14 days before having to move. She lived in a small RV-like vehicle. She was officially considered homeless, but this is not the way she saw it. This was her home; this is where she wanted to be, and in the end, this is where she longed to be, as she died in the hospital.
I have cared for people in strange non-traditional homes. I have been to many a “flop-house”, I have changed wound dressings in the men’s room at a Salvation Army (the men were not allowed back to the sleeping area during the day), and I have stepped over glue traps at the front door of a house with a mouse wriggling to save its own life as I cared for the dying occupant inside. These people were where they wanted to be and were dying the way they had lived.
I once had a patient with horrible COPD who lived in a small ground-floor apartment. He kept his little rascal scooter outside the door. When I admitted him to hospice there was a great amount of push-back from the administration because he lived alone. Finally, they agreed to allow him to remain on service with him signing a release of liability. He was an interesting man. I noticed a photo of a handsome young man in a cracker-jack uniform. I asked, “who is that in the photo”. He answered, “It’s me. I was stationed in Long Beach during the Zoot Suit riots, so I never went to shore. If I went out the Mexicans would beat me up for being a sailor and the sailors would beat me up for being a Mexican”. We laughed about it. One day I went for a visit, and he didn’t answer the door. I found the manager and we went into the apartment together. We found him dead stretched across his bed reaching for his inhaler. He died alone, in his home, in much the way he lived his whole life…alone.
I find the paternalism on the East Coast unnerving when it comes to discharging patients to their homes. I recall an incident when an ill, elderly Puerto Rican woman’s family attempted to take her back home to die. It turns out the family lived in a two-bedroom apartment with her son, daughter-in-law and their five children. The curmudgeonly case manager refused to discharge her to her home because it was an “unsafe discharge”. “What?!”, I asked. “By whose standards?”. She argued the apartment was too small and there were too many people and that it must be dirty. We went around and around, and my hand was forced…I played the “race card”. She was discharged that day, back to her home embraced by the love of her children and grandchildren.
In some cases, home is not just a house, it is a country. While running a hospice in California I had a number of Mexican immigrants who were on hospice services who decided they wanted to go back to their homeland of Mexico to die. California was one of the few, if not the only state to allow undocumented immigrants hospice services through Medicaid back then in the mid 2000s. Frankly, we implored them to stay in place because, unless they lived in Tijuana (just across the border) they would not have access to opiates for their cancer pain. Back then there were only two hospices in all of Mexico. They insisted on making the trek. Their families would pack them up in the family car, and we would prescribe them two weeks’ worth of opiates and say our goodbyes fearing for their well-being and certain future of untreated pain. We only once heard from a family calling and begging for more opiates and we sadly had to tell them we were powerless to provide them. We did make calls to surrounding hospitals to no avail. I still occasionally wonder what happened to those souls, and how they died, but they did get home. I hope it was worth it to them.
Home is a place where familiar, comforting smells waft through the house. It is where you can hear your grandchildren in the next room and occasionally have them join you for a nap. It is where your cat can jump on your chest while you lay sleeping, or your dog comes to hog the bed. You can’t get that in a facility. Up until two generations ago, this was the normal manner of dying. It is something we have lost to the modernity of medical technology.
People have cared for their own since the beginning of time, without framed degrees, licenses or certifications. How did they ever manage? There is evidence that the Neanderthals cared for the weak, frail, and elderly in their groups. Mind you the elderly were in their late 30s. Skeletal remains show evidence of those living into their 40s with scoliosis, others with healed bones. Archaeologists surmise that this is evidence of “pro-societal” actions of compassion and efforts of caring 1.
I want to tear my hair out when I hear health care professionals telling family things, such as “If you leave her in the hospital you can sit at the bedside and just concentrate on being the daughter”. WHAT?! Would anyone ever tell a mother, “Just leave the baby here with us and you can come to visit and concentrate on just being the mother”? Cavemen managed this in the midst of fighting for survival–finding shelter, hunting for food, keeping other clans from stealing their food and shelter whilst dodging Sabre-Tooth tigers. It is no wonder they were old by their 30s. If they managed, we can manage to take care of our own too2.
Mind you, I understand societal changes such as two-income families, families divided by geography and estrangements. I would argue, however; that many of these choices are cultural. I have not worked in Los Angeles for over 10 years, but when I did and went to nursing homes in East Los Angeles (the historically Mexican side of town which is not as much so now due to gentrification) I would rarely see a Spanish surname on the patient census board. When I did it usually belonged to someone without family or estranged from their family.
Now, as I visit a mostly Caucasian population in nursing homes, I listen to the lamenting about being there and missing watching and interacting with grandchildren. Sometimes I have heard them wondering out loud as to why their family with means and financial resources decided to place them in a facility rather than using those resources so they could be cared for in their homes. What I would tell these sons and daughters is “your children are watching”…our children are watching.
Some of this is our government’s fault. This issue could be resolved easily if there were the will. We know that ageing in place and dying at home is less expensive than living and dying in a facility. One source says that the savings are over $1500.00 per month to Medicaid/Medicare, but that is from a study in 2012 3. Certainly, that number has increased over the decade since it was written. In 2016 nursing facilities averaged more than $2900.00 per month when compared to services provided in the home4. That is quite a difference in just four short years.
As I said, this could be solved easily if Medicare would allow for private caregivers in the home. I think this will be the case, but not until the bureaucrats can develop a means to overregulate the services to the point where it is as difficult and just as expensive as the facilities. What we know about nursing facilities is that they are woefully understaffed. More than half of U.S. nursing homes have staffing ratios that do not conform to regulatory standards. It is also known that better ratios result in fewer complications, rehospitalizations and pressure ulcers5. I once visited a nursing home that had a nursing ratio (RNs, LVNs, and Nursing Assistants) to patients of 1:18. Outlandish, I know. This is partly due to rapid turnover of employees, low pay and lack of interest in the vocation on the part of the aides’ 5.
I walked into a nursing home the other day and they were playing a song called “Stomp All Night”, which was followed by a Barry White song. Mind you, those were songs I danced to in the late 70s. I feel much better when I walk in and hear Frank Sinatra or Glen Miller playing. Our time is coming, and it is coming soon; and for those of you under 40…trust me, sooner than you could ever imagine. For my generation, our numbers are growing, and this is a problem that needs to be solved yesterday. When I worked in hospice a colleague and I used to joke that we would rather die than go to a nursing home. Now it doesn’t seem like such a joke. I once told a friend there are worse things than death and he retorted “Yeah Rebecca, but not many”. I think the fates I have witnessed in some nursing homes may just qualify as one of those few things that are worse than death.
1. Spikins P, Needham A, Tilley L, et al. Calculated or caring? Neanderthal healthcare in social context. World Archaeology 2018;50(3):384-403
2. Serangeli J, Van Kolfschoten T, Starkovich BM, et al. The European saber-toothed cat (Homotherium latidens) found in the “Spear Horizon” at Schöningen (Germany). Journal of Human Evolution 2015;89(172-180
3. Marek KD, Stetzer F, Adams SJ, et al. Aging in place versus nursing home care: Comparison of costs to Medicare and Medicaid. Research in Gerontological Nursing 2012;5(2):123-129
4. Newcomer RJ, Ko M, Kang T, et al. Health care expenditures after initiating long-term services and supports in the community versus in a nursing facility. Medical Care 2016;54(3):221-228
5. Spilsbury K, Hewitt C, Stirk L, et al. The relationship between nurse staffing and quality of care in nursing homes: a systematic review. International journal of nursing studies 2011;48(6):732-750