Dying in America Sucks

There is a bit of writing I’ve wanted to do for some time as a follow-up to the letter I wrote about my mother’s passing. Although I had written about how she had gone, at the time I had only captured the conclusion of a story that had started over a year prior. I feel now that I’ve given respectful elbow room to the events of that previous essay, and that it is a suitable time to fill in the details.

I was spurred on by a recent Seattle Times article. To briefly summarize, an elderly woman calls 911 to report that she is in pain and unable to get out of bed. Emergency services do not prioritize responding to this call, and after several days she dies alone in her apartment. The story is written to elicit a sense of indignation at the failure of emergency services to respond to a person in crisis. However, I want to offer a different perspective. Consider this offer a debt to be repaid at the end of this piece.

During the progression of my mother’s disease, I often encountered a reflex in the people I told: they would talk themselves out of the idea that a similar crisis could loom for them. “Cope” is what I believe the newer generations call it.

To speak plainly: death comes for us all. Unless they have already (in which case, my condolences), your parents will die. Your older relatives will die. As you age, you will lose older siblings, cousins, neighbors, and friends. And then you will die.

What I want you to understand, and the reality I beg you to not look away from, is that dying in America sucks.¹ It probably sucks in lots of other places too. But I need you to understand the specific ways it sucks here so that you’re prepared for the time you are called upon to help someone who is not in a position to help themselves navigate it.

The easiest way for me to say what I have to say is to discuss things in roughly the chronological order that I experienced them. However, before we get to that, I need to establish some background.

Money doesn’t save you

To set the stage, my mother had a modest retirement savings. She was by no means wealthy, but she had plenty for a tidy apartment in a nice community. She drove a decent car, and could afford to take a vacation every year or so out of the country. She was on Medicare and her supplemental insurance, from Kaiser, was covered by a modest pension she had earned as an educator. She had budgeted as if she would live into her 90s, but was in her late 70s when she passed.

I mention this because I want you to understand the struggles that followed were not precipitated by her financial situation. She was not at any point at risk of running out of savings. It was simply not a factor in what followed.

While money makes things easier, unless you have enough money to hire a staff of round-the-clock caregivers (and you pay them enough to care earnestly about your well-being), you have not bought your way out of the challenges of end-of-life care. The number you need is very large and if you’re reading this, it is unlikely you or your parents have that level of wealth. If you are not at this point in your life familiar with the concept of a household staff it is very unlikely you have bought your way out of this mess.

Health might not save you

My mother was not a particularly athletic person, but she was active. Daily, she took her dog to the dog park near her home. She took him on walks around the park and threw balls for him. She had two horses, located at a barn some distance from her home, that she helped care for. One of them she would ride regularly (and he was considered a challenging horse to ride). She was active in her community and knew her neighbors. She had regular visits with her doctor.

As her final act as a healthy individual, she danced at her younger son’s wedding.

Having a healthy body and mind buys you some runway. You have more strength to lose before you’re unable to care for yourself. But sickness can come for anyone.

Your connections might not save you

At the time this story begins, my mother lived alone. She had divorced my father some time back and he was no longer a part of her life. She lived in a city adjacent to my brother and me. I visited her every couple of months or so, though we would text more often.

I thought this was enough, but I didn’t appreciate how the threads that connect us to our family can atrophy. A phone call doesn’t show when someone is struggling to move. Visiting someone now and then doesn’t get you through their front door when there is a crisis where hours or minutes matter. And the neighbors who may have concerns or could get through the door have no idea how to reach you.

How long would it take someone to notice a family member is sick? Dead? Who would find their body?

If you find yourself without the strength to get out of bed, and you cannot reach your phone or your phone is not charged, the answers are not pleasant.

Luckily for my mother, her story did not end here.

Hospitals want you out ASAP

My mother’s story began when she awoke to find she was having trouble catching her breath. She had once before had a blood clot in her lungs (a pulmonary embolism) and suspected the same was happening again. She called 911. She was well enough to be able to unlock the door for them, and they transported her to the hospital.

She had called another family member on the way to the hospital and they called me. I inferred she likely needed a charging cable so I stopped at home for that and a few things for myself before heading to the emergency room. It would not be my last time performing this routine.

It was a nice hospital, in a nice part of the region. There were expensive cars in the garage, lots of glass on the facade. Everything was bright and clean and orderly. The number of people waiting in the ER was always small and their demeanor patient. I will call this nice hospital “Overlake” because that’s what it is called.

From the emergency department, she was admitted to the ICU where they performed an emergency surgery to extract the clot and put in a filter to prevent additional clots from traveling to the same site. During her admission she had tested positive for COVID-19 (though she was asymptomatic), and the doctor told us this could be a cause for the blood clot (despite her being on blood thinners from the previous embolism). We were confidently assured that the problem was identified and addressed, that she was fit to go home the same day, and that while she should take it easy for a few days, she could otherwise resume normal activities.

My mother went home feeling a bit tired but otherwise well. I drove her home, made sure she had food handy, and then left her alone to get some rest. At this time, she had no trouble moving around, getting from the car to her apartment, or getting in and out of bed.

Over the next couple of days we would speak on the phone and she assured me she was doing fine.

But a couple of days later I received a call from a family member who informed me that my mother may not be doing as well as she claimed. Because of this call, the story continued.

I immediately drove over and found that she had been deteriorating over the day and was now struggling to stand up. We decided to head to the ER, but it became quickly apparent that we could not make it safely to the car. I called 911. After a brief evaluation by paramedics, an ambulance was ordered and took her to the hospital.

This time she was admitted to the hospital into a standard ward. A different doctor informed us that they had been too aggressive with the new blood thinners they placed her on and this had resulted in internal bleeding which had been weakening her over the last few days. They went on to say that while the original doctor had been a little bit optimistic about her recovery time, she was still on the right path. She received a blood transfusion and stayed overnight for observation. The next day she was sent home again and we were told she would be safe on her own.

In the doctor’s own words, “hospitals are not where people go to get better.” That would make for a hell of a slogan on the side of the building.

This time we were wiser. Rather than going home alone she stayed in my brother’s guest room. She was visibly weaker and we started ordering equipment to help her more safely use the shower and toilet. A few days later, I was supposed to take her to a follow-up visit, but we found out that morning she was unable to stand on her own.

A third call to 911 and she was admitted once again to Overlake.

My mother was visibly swelling up. Her legs had grown massively in size. She could not stand and even struggled to move her legs over the edge of the bed. Even though this was a massive degradation from the first time she was discharged, the doctor again told us that there was nothing wrong with her and that she was going to be discharged. They told me that my mother was just getting older and it was my problem to take care of her. Never mind that a week prior she had been able to ride a horse and walk a dog. The doctors refused to admit she was suffering from an acute problem.

I informed them we would not be leaving and emphasized it was not safe for her to be discharged. The decision to discharge seemed to be largely driven by a lead nurse for the ward. My mother’s attending physician looked at me like her hands were tied.

Eventually, the doctor ordered a physical therapist to perform an assessment. They were able to confirm she was not fit to live alone. With this information, the physician was able to twist the arm of the system and have her admitted to a skilled nursing unit. The lead nurse for the ward would not look at me as she visited the room to do paperwork for her discharge.

The default position of the medical system is “it is not my problem.” The fact that she was a senior citizen made it all the easier to blame her degrading condition on her age rather than an unknown affliction. Even though she was at a good hospital with decent insurance and an ability to pay, they would have put her in a taxi and sent her home to die. And then you would have been reading about her in the Seattle Times.

Skilled nursing unit

My mother was transferred from the hospital to a skilled nursing unit about half an hour away. At this point, everyone assumed the difficulties she was having were still due to complications from the blood clot in her lungs; her heart and lungs were weakened and needed time to heal.

If you’ve ever heard or thought about an elderly person being “put in a home,” what you’re most likely thinking of is a “skilled nursing unit.” It is a hospital-like facility but a little less formal. There are no doctors on site; this facility had an Advanced Practice Registered Nurse (APRN).

These are not nice places. TVs are on all the time. The food is painfully bland. There is frequent staff turnover. My mother would routinely have to wait over an hour to get a Tylenol because there was only one person in the facility allowed to dispense it.² Walking the hallways to get to her room it wasn’t out of the ordinary to hear patients screaming, mostly in confusion. One elderly man kept asking me if I could take him home; he desperately wanted to go home.

Despite this, these places are not cheap. If we had been paying out of pocket, the cost per month would have been approaching ten thousand dollars. In this case, the cost was covered by Medicare for a limited recovery period.

Cancer diagnosis

The skilled nursing unit specializes in folks recuperating from an acute injury that has been treated, something like a fractured hip or stroke from which they are expected to make a recovery.

This was not the case for my mother, whose condition continued to deteriorate. Her legs swelled further. Her mobility was so limited that she started to require a special crane to move her in and out of bed. She started to suffer from severe digestive problems. The APRN tried her best with the limited attention she was able to spare. But the facility was not equipped to monitor or treat someone who had an unidentified condition and who continued to deteriorate.

She was sent to the hospital several times to address digestive issues and to drain the fluid that was accumulating in her abdomen.

During one of these visits she underwent imaging for clots in her lungs and heart. It was then that someone finally noticed the tumors growing in her abdomen. A test of the fluid they drained from her abdomen confirmed the diagnosis: late stage ovarian cancer that had metastasized through her abdomen. At this stage she was weeks away from death.

But we were lucky. Chemo offered a promising chance at slowing the advance of the cancer.

My mother was admitted back to Overlake for her next few doses of chemotherapy. She would return to the skilled nursing unit between treatments, but was now at least being treated for the underlying condition.

Medical transport

A brief detour in my narrative: medical transportation. Since being admitted to skilled nursing, my mother was confined to a wheelchair. For the majority of her time, until she started to improve, she required a specialized “tilt” chair, which would tilt back for both comfort and safety reasons. She could only get into the chair through the use of a special lift, so there was no hope of getting in and out of a car. Journeying to her medical appointments from skilled nursing would require specialized transportation.

Private-pay transportation services cost about $100 to $150 per trip and were generally professional and reliable. These are companies like Trimed and Medical Transport Northwest.

Alternatively, Medicare would also provide 12 trips per year, contracted out to the lowest bidder. In this case, transport would be provided by a modified minivan. The minivan may or may not have an unexpired license plate and a fully functioning door. Sometimes the driver would stop talking to whoever it is they’re always on their Bluetooth with long enough to acknowledge you before leaving you outside the hospital.

Respite care

It was remarkable how quickly the chemotherapy took effect. Within two doses, her swelling subsided immensely and she slowly regained the ability to walk. Every day she seemed a bit stronger. Eventually, her case worker deemed her too healthy to remain in the skilled nursing unit (or too healthy to ask Medicare to pay for it).

The plan was now that she would continue to improve under chemotherapy, until she was well enough to undergo a surgery to remove the remaining cancer.

To ease her transition back to independent living, I reached out to a retirement community about respite care. Respite care is to assisted living what a short-term, furnished apartment is to a normal lease. It is a way to stay in a retirement community, with all the help and services that provides, without a long-term commitment. There would be a nurse and other assistance available on-site, at the push of a button she would always have on her neck. She would have assistance with using the toilet and shower, physical therapy, and so on.

She stayed at the Watermark in Bellevue, which was close to the clinic where she was now receiving outpatient chemo. The staff were kind and the food was wonderful. Her room felt like an apartment rather than a hospital room. She was able to decorate and put up photos. The kids and I would visit for brunch, where the staff would often “forget” to charge us extra for our food as guests.

None of this came cheap. The cost was about $5000 per month, and it was only that low because the facility was relatively new and at low occupancy. Had she remained full time, it would have cost considerably more.

She would remain here for several months, including through Christmas.

And including through her surgery, where we would learn the cancer was far more advanced than the initial imaging had revealed. She was here when we learned there was too much cancer to be removed surgically and that now we’d have to rely on the chemotherapy to continue to beat it back.

Discharged to home

The chemotherapy did continue to work wonders. Eventually, my mother was able to move around without depending on the wheelchair. She moved back into her apartment. I would continue to take her to chemotherapy and to have the fluid drained from her abdomen. For the next several months she was able to live independently. She ordered groceries delivered to her home and was able to do most of her own chores.

In the summer, she was able to take a short road trip to Sun Lakes Park Resort in eastern Washington, in what had been for decades an annual pilgrimage for our family and close friends.

However, then things got worse. And they became worse fast. Her symptoms started to return. The swelling started to worsen. It was harder to stand.

The oncologist informed us that the treatment had lost effectiveness. It was like antibiotics in that way; the weaker cancer cells would be wiped out by the treatment, but some might be resistant. The resistant cells would then come to dominate. She was moved to another drug, but she continued to deteriorate.

I took her to Fred Hutch for a second opinion. The doctor reaffirmed she was on the right treatment, and explained the third and fourth options if this treatment also failed. My mother never wanted to know the odds, so at the end of the appointment I asked if it would be okay for me to speak to the doctor alone. She left the room and I asked for the real outlook: three months was his best guess.

We knew at this point she wouldn’t get better.

I started searching for an assisted living facility where she would spend the rest of her life. I had seen before what it is like when someone deteriorates rapidly and I didn’t want to repeat the experience. I toured places for a couple of weeks and eventually settled on a facility close to home, where I could visit easily, but that would also be on the way to her medical appointments. The price started at around eight thousand a month, though it would go up as her need for hands-on care increased.

I thought I was being proactive when it came to picking a place but we ended up moving her in within a couple of days of making a decision. She was nearly unable to stand anymore. It wasn’t safe for her to be alone. We threw the basic belongings in a couple of suitcases for her, with a promise that I would arrange for the other furniture she wanted. I don’t think it was until we were heading out the door it sank in for her that she would not be coming back.

Assisted living

She moved into Aegis Living in the Laurelhurst neighborhood. The staff were kind and my mother quickly bonded with several of them. Aside from their head nurse, the care staff were generally well-meaning and responsive, but inexperienced. I had to work closely with the staff to ensure they understood the medication she was on, and that they understood the medication options available to them when my mother was experiencing discomfort. While many of the staff were proactive about ensuring her room was tidy and the things she needed were within reach, I still had to visit every other day or so to ensure there was no unmet need.

She was able to meet her new grandson, who would be born a few blocks away shortly after she moved in.

The move had come just in time. A day or so after moving in, she was unable to get out of bed on her own.

Hospice

In the meantime, she was scheduled to continue to receive chemotherapy. Her final appointment was less than a week after moving into assisted living. She was scheduled for another infusion. The nurse at Kaiser pulled me aside as she sat down for the infusion and informed me that, although she was cleared by the doctor to receive another dose, she was of the opinion that she couldn’t survive another round. I asked if we could speak to her oncologist, but he was unable to see us at the time. Kaiser provided a nurse from the palliative care team who also urged me to move her onto hospice care. I spoke with my mother and she agreed.

It is appalling that the medical system would put someone, already in a deteriorated state, in such a position without proper support from so much as a doctor. I consider it an act of cowardice that an oncologist could not be bothered to sit with her and give her an honest prognosis. The work was pawned off to the nursing staff (which, to their credit, did an amazing job with the tools they were given and are nothing short of the most resilient, extraordinary caregivers I have ever met).

If I had not been there, the “are you sure?” would have been answered with an uninformed “yes” and my mother would have died without understanding what was happening to her.

But that isn’t what happened. Instead, the paperwork was started to place my mother in hospice care.

For those inexperienced, as I was, hospice care means the focus shifts to the comfort of the patient. Specialized nurses visit every one to two days, adjusting pain medicine as needed. She would remain in assisted living, but the care would be more closely administered by a traveling nurse team that would give more specific directions to the staff on site. An emergency supply of morphine would be available on site. Medicare would also cover a more expensive bed and other quality of life improvements. And a do-not-resuscitate order was put into place.

Final trip to the ER

Unfortunately, because the hospice paperwork takes a while to go through, my mother was subject to one final trip to the ER. It suddenly became very painful for her to swallow anything, for reasons we still don’t understand. She was in such pain that the assisted living place felt they had no other choice but to call 911.

She was taken to Swedish in Downtown Seattle, which is certainly a place. Located in the basement of the hospital, the ceilings were low and dingy. The check-in desk was behind glass. The staff were largely occupied with folks walking in from the street.

She was given some medication to dull the pain. And after they learned she was going on hospice, they suggested we return to assisted living with a bottle of more of the same while the bureaucracy sorted itself out. The hospital staff were busy so I was told I was on my own to locate a wheelchair to get her back to my car.

Actually hospice

The paperwork went through the day after the ER episode. The hospice nurse was quick to take charge. They stopped all the supplements that had been added to her regimen over time. They stopped the blood thinners my mother had been injecting twice a day.

It ended swiftly after that. She stopped eating. Soon, she was unable to take liquids. She slept more and more. I would come in and sit with her. Adjust things. Folks who could visit, did. Others sent texts. I’m not sure if she ever saw them, but I did. A family friend sat with her the evening before she passed. She passed early the next morning. She was alone. The thermal camera in her room noted the abnormality.

Conclusion

I see how the Seattle Times story happened. I was able to sort things out in time, but our system is not scaled for the number of folks who may have a similar story.

To pay my debt: the indignation is ultimately aimed at the wrong target. The fault is not with our emergency services; the problem is there is no system for this. Outcomes depend on the quality of an individual’s support system. I don’t know what the solution is. Staying independent (out of choice or necessity) and leaning on 911 when something goes wrong is going to fail many folks.

Check in on your parents and their finances. I had asked my mother what she expected would happen if she either ran out of money or became unable to care for herself. “Put me in a home,” she said. A “home” does not happen. There is no place someone comes and takes you to when you run out of money. The default is you’re on the street. Yes, places may take Medicaid if you need it. Some require you to be there before your money runs out. They’re probably not where you want them to be. They’re not quality. And you don’t get there without someone helping you into them. “Put me in a home” is not a simple plan.

My friends, I am here for you. Reach out now. Reach out when it is most salient for you. We’re in this together.

For further reading I recommend Being Mortal by Atul Gawande.

1. Unless you’re lucky enough to pass away unexpectedly in your sleep, in which case congrats, you got to do it on easy mode.

2. A blessing of our modern times is my mother had a phone. She routinely ordered items off of Amazon to make herself more comfortable.