Lessons Learned about Death in America

We go through stages in life, ending in death. We see more sunrises and more sunsets, and the years behind us increase while the years in front of us decrease. Without our trying or ability to stop it, following a natural course, the experience of death becomes gradually more intimate until it brings the end to our own life. 

In my case, the first was my great aunt, when I was about 9, who died from suicide. Although I went to the funeral, my youth and weather prevented me from getting a full funeral experience. It was a sunny day and my younger sister and I had matching made-by-hand green flowery pant suits with a halter top (think 1970s). I mostly played and giggled during the day, except after the funeral. Then a heaviness of heart, a cloud, came over me as I walked up the steps of my great-grandmother’s house.

As time passed, the deaths came closer: my aunt’s close friend who died in a motorcycle accident, my grandmother’s close friend, my great-grandmother, my father-in-law, my grandfather. These people, all older than me, were like buffers between me and death. But as each one died, death’s impact on me was greater, and it brought my own death closer. And, as has happened in generations before me, at some point, following a natural course, there will no longer be any older people to serve as a buffer between me and death. My number will be the next in the line. 

I know death can come “before its time,” but psychologically, we assume that we’ll have 60-90 years.

As death becomes more imminent, there are decisions to be made, especially with modern medicine’s abilities to circumvent the body’s decline to the last breath. And from other family members, as they go through the process, we can learn lessons. We can learn what death is as an experience and what is the best course to take as the process occurs.

For my husband and me, death came much closer in September of 2017 when my mother-in-law died. He was the only one of his family in town and seeing to his mother’s daily needs; his sister having moved to Wisconsin. 

One morning, my husband called his mother, as he did at least twice a day. She lived about 25 minutes north of us. Once a week, he would visit in person and run errands for her, and he would take her to any doctor appointments when needed. She had just been to the doctor the week before. But this morning, she did not answer the phone. So he drove up there and went through the door and found her sitting in her chair, but with a blank look in her eyes. She leaned forward, but when my husband asked why she didn’t answer the phone, she said she didn’t hear it. Although she was responsive, he could tell she wasn’t fully alert and cognizant. He thought her oxygen (treatment for COPD) must have been too low or failed during the night.

My husband called the paramedics, who said her blood oxygen was low and said her lung function was low. They gave her some oxygen and told her they were taking her to the hospital. Not long after arriving at the emergency room, she had regained her full mental ability. 

From that point to about 3 weeks later, her situation became a cascade of interventions and negative body responses that ended in her death. Decisions were made by my husband and his sister and by the hospital staff, and we learned lessons from it. I think many others can benefit, so I am sharing these lessons here. 

Lesson #1: Smoking Kills, not just by Low Oxygen

My mother-in-law smoked from her 20s to her 60s. She was a nervous smoker, most often seen sitting at a dining room table and puffing on the white stick to ease her nerves from having to interact with people. When she was diagnosed with emphysema, she quit. But the damage was done.

The treatment is oxygen and what my mother-in-law called her “puffer,” which I think was an inhalant steroid. She complained of being short of breath from time to time. But her oxygen levels were kept up by these treatments. It was in the healthy range at the doctor’s office just the week before.

One time, a nurse explained to my mother-in-law that she isn’t suffocating, as is revealed by the normal oxygen level in her blood. But she feels a tad short of breath, then her anxiety shoots up, and that makes her more short of breath. If she could just calmly respond without the anxiety, it will lessen. Because, she was told, her oxygen levels were normal.

Within the three weeks after that morning she was taken to the hospital, she went into multiple organ failure. We couldn’t understand why, if the oxygen levels were kept up most of the time. But the failing of the lungs has another effect that cannot be treated: the buildup of carbon dioxide. Healthy lungs not only take oxygen into the blood stream and cells, but it pushes out the poison of carbon dioxide. And nothing was being done or could be done to replace that function for her body. 

We found out about this other result of COPD by doing some research on the internet while she was in the hospital. And when we later discussed our confusion at this downturn despite oxygen being up most of the time, the hospice nurse also told us what we had read on the internet: that carbon dioxide poisoning also contributes to death for people with COPD. In fact, the Australian Lung Foundation says receiving too much oxygen can itself increase carbon dioxide poisoning. 

Was that morning of her disorientation a sudden decline from the COPD or was it a result of not being on her oxygen during the night? We don’t know. But whatever happened, it was originally the smoking and resulting COPD that killed her.

Her older sister also smoked, as was common in that generation, victims of the cruel trick that advertising and American pop culture played on them. But she quit much earlier. And she is still alive.

Lesson #2: Ventilator Sedative May Cause Neurological Problems

So my mother-in-law remained mentally alert and cognizant after she arrived at the hospital. Also, no signs of a stroke.  Because of her age, 82, they wanted to keep her for observation and check her heart. She was then moved to a metropolitan hospital 45 minutes away because the smaller hospital did not have a cardiologist on duty during the weekend. No sign of a heart attack, no chest pains, but her age was a risk factor for a sudden heart problem. Better be safe, they thought.

We had been through this with her multiple times in the previous year. Something leads her to going to the emergency room. They suspect her of having a heart attack. The heart function is fine. They want to do a heart cath. She says no, since the EKG is fine and no heart symptoms, no chemicals of heart being in distress. In just the previous incident at a hospital, the cardiologist there said her heart was strong.

This time, my husband comes in to the big-city hospital the next day and is then told that they had to put her on the ventilator. Her oxygen level dropped the night before. How much? We don’t know. We suspect it was minor. Could they have instead increased oxygen tank output and avoided the ventilator? We don’t know. But she was in a hospital ICU, and they did what hospital ICU staff are trained to do, act like it’s an emergency and take strong measures.

What we do know is that after they removed the ventilator a couple of days later, she never regained her full mental abilities. She was lucid only for brief moments. She also could no longer swallow anything. When asked, my husband was told by hospital staff that her “speaking out of her head” and inability to swallow was because she was just very sick. 

We found out later from the hospice nurse that the sedative used for putting someone on a ventilator can cause delirium; in fact, 80% of them do. And the elderly are at a higher risk.

We will never know for sure whether the post-ventilator inability to swallow (seemingly neurological) and the more consistent cognitive problem was from the ventilator sedative or just a sudden and coincidental worsening of her condition. (Remember, the thing that prompted her being put into the hospital was her sudden cognitive problem.) It is also possible the short oxygen drop caused some brain damage, although we don’t think it was that low. She had quickly recovered her mental function the first day, and the permanent mental decline and sudden inability to swallow did come after her being on the ventilator.

And it is a known thing, especially in the elderly. The ICU nurses at the hospital said nothing about this sedative-induced effect when we asked why she got mentally worse. Maybe they didn’t know. Or maybe they didn’t want to admit that possibly the sedative they used when putting her on the ventilator caused a worsening of her condition.  

If a ventilator is needed or you can foresee it might end up being needed, I recommend having a conversation with doctors and nurses to find out if there are options besides the sedative that is known to cause these neurological problems in many patients. Researchers say 40% of the delirium cases from ICU stays can be avoided. 

Lesson #3: Treatments Can Cause Problems

Feeding Tube: She had to be put on a feeding tube and excrement removal tube, so to speak. During this time, a question was raised about the feeding tube instead being put in the torso directly to the stomach. At some point, the doctor asked my mother-in-law, during a brief point of her being mentally alert while no family was there, whether she wanted the torso feeding tube. She said no. We didn’t think until later that maybe we should have told the doctor that my mother-in-law tended to start all her sentences with the word “no” as a word whisker. But we figured there were other problems that can come with the torso feeding tube, and it would have to be redone if the situation lasts awhile. So my husband agreed with that decision and let it go. We still had hope that she could recover.

Heart Arrhythmia: At this time, she also developed an irregular heartbeat. So, to prevent a clot, they started giving her blood thinners. But, those blood thinners started causing some mild intestinal bleeding. So they cut back on the blood thinners. At some point, my husband got a call one night asking for permission to give her a blood transfusion. 

Arm Catheter: She also developed pneumonia. This was not a surprise because there is a thing called “ventilator-associated pneumonia.” (Another thing to be considered when deciding whether to use a ventilator.) Plus, she was lying in bed and had limited lung function, both of which increase chance of pneumonia. So antibiotics were started. 

The pneumonia went away; then it came back. A different antibiotic was tried. At some point, a stronger antibiotic was needed and they put a catheter in her arm to administer it. The catheter went all the way from the arm to her chest. The result of that was that a blood clot was formed and her arm started to swell. But because of some bleeding that already happened, they did not want to give blood thinners. There was also the concern that blood thinners might dislodge the clot, so that it then goes to her heart or lungs. So her arm just got bigger and bigger and bigger. 

As you can imagine, we questioned whether this catheter was the right decision. Before that, she was given meds through an IV. But, I spoke to a friend of mine who was an ICU nurse. She said some antibiotics are so strong that they burn the veins. That is why they are sometimes administered through a catheter. 

Circle of problems: So more problems were developing, some of which were caused by the interventions meant to fix things. And some treatment options could not be used to fix a problem because they would exacerbate another problem. At that point, we could just hope that her body would do what was needed to reverse the course she was on. 

The staff needed to know how far to take any sudden crisis saving measures. The nurse told my husband that if my mother-in-law went on the ventilator again, she would likely never come off and be able to breath on her own again. In consideration of conversations he had with his mother in the past and with the agreement of his sister, he told the nurse to not put her on the ventilator again. She was given a DNR designation.

Lesson #3: Nursing Home Care is Mostly Medicaid, not Medicare

We hear in the news media about Medicare as the primary source of healthcare funding for seniors/elderly. And, based mostly on news coverage, I thought that Medicaid was for caring for the poor. As my mother-in-law’s condition in the hospital was not improving and seemingly not going downhill fast, we were thinking she might be in this “not cognizant and unable to feed herself or even swallow” condition for weeks or months. I knew from my experience with my great-grandmother that once the hospital decides they cannot help the ill person, we will have very little time, a day or two, to find another option for her care. Of course, her condition was such that she could not go back to living in her apartment.

In making calls about nursing homes, I found out that Medicare only covers the first three months. Usually, as part of the process, an application is made for Medicaid and that means the person’s assets must be low enough to qualify. I vaguely knew something about “the government” taking a person’s house to pay for nursing home care. But I found out more how it works. Medicare covers nursing home care for 3 months, then most assets are used up to pay for it while application for Medicaid is processed. It also includes using her Social Security income. 

It’s less common for someone to have a rich family member who can pay for the nursing home care or have long-term insurance that will pay. Even those insurance policies usually have a time or a maximum benefit limit. 

Some stats:

• The average annual cost of nursing home care in Alabama is $73,000 for a semi-private room. (Genworth)
• Medicaid is paying for the care of 62% of nursing home residents in the US. (Henry Kaiser Family Foundation)

So the perception I have of Medicaid being only for the poor is not accurate. How many middle-class families can afford to cover that annual cost? So Medicaid is also for most of those in nursing homes who will become poor so they can get coverage because Medicare does not cover their long-term nursing home care. And, the amount Medicaid pays nursing homes is less than what they can charge if payment is from private insurance or individual pay. 

When we hear of proposed cuts to Medicaid, I will think of nursing homes now, instead of just thinking of the poor. If the amount states receive for Medicaid is cut, the states will have to take some action, such as increasing the state-portion of the reimbursement, or make the requirements for receiving the benefit more strict (person must be more disabled), or limit the amount paid for the services, or put a lifetime limit on the benefits, or require family to pay part of it. Most of these pose a threat to the income amounts nursing homes receive from 2/3rds of their residents, which may cause some nursing homes to close. I’m not taking a political position for or against anything.

But I do think it’s a good to know, a lesson we learned as death came closer to my husband and me with the experience of his mother, that Medicaid is something many middle income people will end up using as they go to nursing homes; it’s not just for the poor. 

Lesson #4: When Death is Known to be Close, the Type of Care Changes

Within a couple of days of our checking into nursing homes, we were told my mother-in-law’s pneumonia was now a type that does not respond to antibiotics and that she had developed sepsis. We were told she is in multiple organ failure. Discussions with nurses and the pulmonologists about the future grew more dim. And so it was no surprise when we were told she would be released to hospice care as she was actually in the dying process and no intervention could reverse it without causing or worsen other problems. The question of how long before she would die could not be answered for sure. Estimates were a week to 3 weeks.

We found a hospice company, and the hospital and that company made the arrangements for my mother-in-law to be transported by paramedics back to her apartment. My sister-in-law came down so she and my husband could run 12-hour shifts of sitting with my mother-in-law.

The feeding tube was removed, and some morphine was given to my mother-in-law to keep her calm and more comfortable while being transported. The medical bed was right in the living room. My husband came home to sleep and my sister-in-law slept in the bed in the apartment during my husband’s shift. 

The hospice nurse gives information to help the family know what to do and what to expect. Many think they know what medical help they want in that situation, such as water, feeding tubes, ventilators, etc. But you may see these things are not in the best interest of the dying person.

In the case of my mother-in-law, the hospice nurse said that since she can’t swallow, giving her water would just allow the water to go down into her lungs and put her in distress and cause more discomfort. So, she said that whether to give drinks of water or continue oxygen was up to the family, but the change should be from an attitude of giving her body what it needs to survive or improve to an attitude of doing what is going to make this transition to death the easiest and least distressful or painful as possible. Some measures that in other situations will help the person, in this case, only prolong suffering. Changing to that attitude can be difficult and contrary to our natural instincts.

My husband decided to not have any smell of cooking food in the apartment, again to lessen distress or discomfort for his mother.

The hospice nurse showed my husband and his sister how much of the liquid morphine to give and how to give it. It’s dropped in the mouth. She said not to worry because he can’t give her too much, but more than what is suggested doesn’t help her more. The most she would need is 5 drops.

 

I also learned that morphine is for more than just pain. It was also to, basically, put her back to sleep and prevent her from become distressed. So if she woke up, they gave her morphine. And based on the level of her distress, they decided how many drops to give.

The hospice nurse also explained what my mother-in-law’s body would do in the last moments of life. 

The whole thing is terrible, but it was made much easier by the knowledgeable and comforting guidance of the hospice nurse. As my husband told her, they are doing a very important service to humankind, helping in many ways when an inexperienced family faces the most difficult challenge we humans face. As my husband says, “Those who died before us have not experienced anything different than what we all will experience.” And what I say, “None of us get out of here alive.” So knowing about the experience and how to best manage it is something we all can benefit from.

It turned out that death came to my mother-in-law within 2 days of her coming back to her apartment. We didn’t deal with this lingering for weeks or months.

Lesson #5: Funerals Don’t Have to Be Expensive

A year or two before she died, my mother-in-law decided she wanted to be cremated after her second husband was cremated. She saw how easy it was on the family and less invasive on the body than embalming and having a “showing” at the funeral home. So, in harmony with her wishes, there was just a graveside service. 

She did not have lots of friends, being 82 and having been widowed from 2 husbands. She had casual conversation with neighbors, but even stopped doing that in that last year. She depended socially and in all other ways on family. Her sister, her nephew and her niece, her sisters-in-law, one of her granddaughters and some of my family were there. Marriage mates to these people and my sister-in-law’s high school friend came. It was about 20 people.

The ashes were buried in a family plot next to my father-in-law. The headstone was already there. There was no cost for the plot; it’s next to a country church that doesn’t charge for members of the church or their families. The grave diggers are volunteer custodians of the cemetery. Of course, we donate to the upkeep every time we visit the cemetery, which is about 4 times a year. 

Because we did not use the funeral home except for transporting the body to the funeral home and cremation and buying the urn and placing the obituary and ordering the death certificates (didn’t have any funeral service there), did not buy a casket and did not have to pay for the headstone (it's a joint one with her husband and was already there) or the digging, it was not expensive at all. We did have to pay for her death date to be engraved in the headstone. (Another lesson: getting the headstone engraved takes weeks to months. They are in high demand. Be patient.) And we bought a flower spray, and I printed out a bigger version of a picture of her that we put in a frame in the middle of the spray. The pastor was given a stipend.

The end total was about $3,400.

If you have any lessons you’d like to share or if you have questions, please make a comment. I’d love to read them and I’m sure others could benefit.