Running head: END OF LIFE DECISIONS IN PARKINSON’S DISEASE 1

End of Life Decisions in Parkinson’s Disease

Emma Koenig

James Madison University

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Introduction

According to the Parkinson’s Disease Foundation, Parkinson’s disease (PD) is a

movement disorder that is both chronic and progressive. Although the cause is unknown, it is

known that the level of dopamine in the brain is decreased, causing the person to be unable to

voluntarily control movement. The Parkinson’s Disease Foundation also states that around one

million Americans are living with PD and that approximately sixty thousand are diagnosed each

year. It also states that the combined direct and indirect cost of PD is $25 billion and that the

average cost for medications for individuals averages $2,500 per year. Due to PD’s progressive

nature, many patients and their families find themselves dealing with end-of-life issues such as

symptom management, future planning, and cognition (Lageman, Mickens & Cash, 2015). These

end of life decisions with PD are especially difficult if the person has not discussed their wishes

while they were able to make decisions (Walker, 2013).

Background

It was my second time at clinical, having a patient all by myself. My patient had suffered

from a subdural hematoma and was also battling Parkinson’s disease. His Parkinson’s had

caused him to no longer be able to swallow so a PEG tube was inserted and he was made

indefinitely NPO. However, he did not agree with this. When I was taking care of him he would

consistently state “Why are you starving me?” and “I want to eat.” He did not wish to make his

own medical decisions and the doctors found his mental status to be questionable due to his

hematoma and a history of TIAs. The responsibility for his medical decisions were passed down

to his power of attorney, his daughter. However, he was recently married to a woman (who was

not his daughter’s mother) who very clearly stated that she believed that she should have the

legal right to make her husband’s medical decisions and should be the power of attorney. The
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daughter and wife clashed on his care because the daughter felt as though the option of removing

the PEG tube and allowing him to eat and risk aspiration and pneumonia should be seriously

considered due to her father’s frequent protests against his NPO status. His wife did not agree

with this and felt that her husband should be given as long as possible to live with the use of a

PEG tube and an NPO diet. I listened openly to his wife tell me about her side of the story. I

researched on the chart information about the family status and the providers’ thoughts on the

patient’s mental status. I would classify this as a moral dilemma. There is no easily identifiable

correct option. There are benefits and drawbacks to both outcomes (removing the PEG tube or

leaving it in).

Methods/Findings

The 8 key questions are a tool developed by James Madison University that reflect the

best practices in ethical reasoning in order to help prompt with decision making. They are:

fairness, outcomes, responsibilities, character, liberty, empathy, authority, and rights (James

Madison University). In this case fairness would be difficult to achieve. The parties involved

seem to have conflicting wishes for outcomes. There would be nor physiologically possible way

to allow him to eat without risking aspiration and pneumonia. The patient had tried oral swabs

and oral rinses and stated that they had not helped him. The best I could do to act fairly was

listen open-mindedly to both the daughter and wife. The best outcome in this situation would be

the patient being able to love a long, happy life. However, if eating is something that he

considers to be a large part of his quality of life this would not be possible with the PEG tube.

However, eating and passing away from aspiration and/or pneumonia does not seem like a

peaceful death. Also the fact that PD is progressive and will only get worse as time goes on is a

significant factor to consider.

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I found this situation to be very distressing to my character. I was very hard for me to

look him in the eyes when he was telling me he was starving and tell him he cannot eat multiple

times. I do not want to be the kind of nurse that allows unnecessary suffering to befall my

patients especially if they are nearing the end of their life. This situation has a huge issue with

autonomy. The patient very obviously stated that he wanted to eat but his mental status was

considered questionable due to his hematoma and past TIAs. It was difficult for me to ascertain

from the chart if the consent for the placement of the PEG tube was from the daughter or the

patient, although it was placed after the hematoma. If we simply went by the patient’s wishes

then the correct course would be to allow him to eat, it was just difficult to ascertain if he

understands the consequences of eating.

Looking at this situation from the position of a daughter, I would not a woman who was

known for two years trying to take away my ability to make medical decisions for my father who

I have known for my whole life. However, I would definitely not want to approve something that

might cause my father to pass away. On the other hand, in the end, I would want my father to

pass away with the quality of life that he is asking for and wants. It is a very well recognized that

patients have autonomy and the right to refuse treatment. When a patient is deemed unable to

make those decisions such as in this case, they go to the next of kin or the selected legal

appointee. In this case that is the daughter, until a court of law rules otherwise. The medical

professionals then have the responsibility to respect her decisions as though they are the

patient’s.

In this case an important legitimate authority to look up the would be the American

Nurses Association (ANA). According to the ANA Code of Ethics “when the patient lacks

capacity to make a decision, a formally designated surrogate should be consulted” (American

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Nurses Association, 2015). The ANA also notes that it is important to include surrogate decision

makers in discussions and education. The ANA Code of Ethics also states that when taking care

of paitents nearing the end of their life, palliative care should be of the upmost importance.

Conclusion

Since this situation is a moral dilemma there is no one correct recommendation. My first

recommendation would be to educate the daughter on her father’s condition and support her

decision making process my answering questions and listening in a non-judgmental way. I would

support her whether or not she decided to continue with the NG tube. Another option would be to

give the patient food and liquids against the doctor’s orders. I do not recommend this as it goes

against the trust that both medical professionals and family members put in nurses to carry out

safe, competent care. The main thing that I realized that by going through the 8 key questions I

was able to figure out what I might want for myself or my parent. After going through the ANA

Code of Ethics I realized just how important it is to respect the wishes of the family and to

support and educate them in their decision.

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References

American Nurses Assocation. (2015). Code of ethics for nurses with interpretative statements.

Retrieved from:

http://www.nursingworld.org/MainMenuCategories/EthicsStandards/CodeofEthicsforNur

ses/Code-of-Ethics-For-Nurses.html

James Madison University. (n.d.). The Madison collaborative: Ethical reasoning in

action. Retrieved from: http://www.jmu.edu/mc/8-key-questions.shtml

Lageman, S. K., Mickens, M. N., & Cash, T. V. (2015). Caregiver-identified needs and barriers

to care in Parkinson's disease. Geriatric Nursing, 36(3), 197-201.

Parkinson’s Disease Foundation. (n.d.). What is Parkinsons’s disease?. Retrieved from:

http://www.pdf.org/en/about_pd

Parkinson’s Disease Foundation. (n.d.). Statistics on Parkinson’s. Retrieved from:

http://www.pdf.org/en/parkinson_statistics

Walker, R. W. (2013). Palliative care and end-of-life planning in Parkinson's disease. Journal of

Neural Transmission (Vienna, Austria: 1996), 120(4), 635-638. doi:10.1007/s00702-013-

0967-3