For this weeks post, I am exploring the available resources for those with a terminal illness in Knox.

I am going to explore this topic through the lens of a personal story that is quite relavant to the topic.

A Bit of Background

I live with my mom, dad, three siblings as well as my grandparents and uncle. In early October, my grandfather had been experiencing headaches and confusion to the point where my grandmother decided to bring him to the ER. Within a week, what we thought was complications with his diabetes turned out to be stage 4 lung cancer that has spread to his brain. Once we found out he was terminally ill, there were many hard decisions we, as a family, had to make. This experience taught me a lot about end-of-life care in the US healthcare system.

Seeking Medical Attention during a pandemic

My grandfather was 68, so he had been a bit wary about going into public places because he was in a higher risk category. Because of this, he had been a little more hesitant to go to the hospital. In fact, he did not go until my grandmother convinced him to do so.

While it is important to be cautious about going into public, especially if one is at higher risk, it is also important to seek help when needed. Part of me wonders to what degree did this avoidance of COVID-19 did more harm than good. That is, if he had gone sooner, would it have been caught earlier? As I mentioned in last week’s blog, the cost-benefit analysis of going to a hospital is an important one to consider. In the case of my grandfather, he did not exactly know why he was experiencing these symptoms so I think it is very important to seek medical attention in a case of experiencing severe symptoms.

Direct orders and dnr’s

Once my grandfather was admitted, things devolved relatively quickly. The first night he was there, he coded; the doctors were able to resuscitate him. At this point, we did not know his diagnosis so when my grandma was asked if this was okay, she of course said yes. After he coded, we began to look for some sort of direct order he had written.

Though relatively vague, we were able to find a document on his computer titled “last will and testament” that briefly stated his wishes if he was ever in a situation like this. While it was nice to have this, there were some aspects of his situation that was not addressed in this document. He did not specify whether or not he wanted a DNR.

I have since learned the importance of providing as much detail in direct orders as possible. In addition to this, I think specifying the situations in which one would or would not want a DNR is crucial.

By the time we learned his diagnosis and prognosis, we decided as a family that a DNR was something we wanted. It was hard to feel like we were making this decision for him; he was not in the state to do so himself.

visiting hours and covid-19

One of the hardest things about this situation were the added obstacles due to COVID-19. Initially, only my grandmother was allowed to see him and was limited to 4 hours a day. Once they gave him a prognosis of weeks or days, we fell under the compassionate care rules. This gave us the ability for 2 visitors per day during these hours. Even still, it was hard to decide who would get to see him each day.

the icu

On the day I was able to go visit him, I was expecting to find him in a relatively quiet place as to be as peaceful as possible in the process of dying. This was not the case. When I walked in, there were 5 beds in the room, all of which were separated by curtains.

I quickly realized that this was a room full of people waiting to die.

Each one of the patients in this room needed to be watched and cared for full time. It is unrealistic to have one-on-one care, so this setup made sense in principle; still, it was surreal to walk into.

hospice care

After two weeks in the hospital, we were able to bring my grandfather home to spend his last days in the comfort of his own home.

This was not an easy task: 24 hour care was required; we took shrifts as a family. This wouldn’t have been possible if he did not have such a support network.

Hospice nurses came to the house a few times to make sure we had everything we needed and to show us how administer some medication.

If one did not have this option, another comfortable option is a hospice home such as The Joan Nicole Prince Home. Access to homes like these normally entail insurance/out-of-pocket payment as well as a waitlist.

Communication

Communication between the doctors and my family were better or worse at times. At times, I noticed that the nurses and doctors talked around what was clearly happening: he was dying.

This is only to be expected. It is hard to know patients’ and patients’ families views/feelings towards death.

On the other hand, when we were faced with challenging decisions such as whether or not to continue a feeding tube during hospice. One of the doctors said something quite helpful: “are you doing this for him, or for you?” I thought this question was really helpful in decision making.

access

Delivering quality hospice care is a real challenge. It is absolutely crucial that one has some sort of support system to help at home.

A challenged that I noticed living in a rural area is the distance between our house and the closely pharmacy. On the first day my grandfather got home, we had to pick up medications (morphine was included as to keep him out of pain). When I arrived to the pharmacy, I was informed that it had been sent to one in Albany (I was in Schenectady). By the time we were able to get the medication and return home, my grandfather was in a lot of pain. While sending mediation to the wrong pharmacy seems like a small mistake, it had ramifications.

end of life care

This experience gave me a new perspective on end of life care. Living in a rural areas did pose challenges in regards to getting supplies in a timely fashion. In addition to this, I learned the importance of stating direct orders as soon as possible as situations like this are unpredictable.

Sources:

https://www.joannicoleprincehome.org

https://albanymedcareers.com/nursing/nursing-units/critical-care-units/ 

https://www.google.com/url?sa=i&url=https%3A%2F%2Flernerandrowe.com%2Fpersonal-injury-law-offices-in-waukegan-medical-attention%2F&psig=AOvVaw2qEH46Ev53QOoMbKXXuc7D&ust=1604614044126000&source=images&cd=vfe&ved=0CAIQjRxqFwoTCOCL0K3z6ewCFQAAAAAdAAAAABAD\ 

https://dailycaring.com/what-is-a-dnr-do-not-resuscitate/ 

https://theconversation.com/who-needs-to-be-in-an-icu-its-hard-for-doctors-to-tell-56728

https://www.care.com/c/stories/5519/what-is-hospice-care/