th

Centre National de Ressources Soin Palliatif definition [translated]:
…the objective [is to] relieve the physical pain while considering psychological, social, and spiritual suffering to preserve quality of life of sick persons and their entourage
….Palliative Care is interactive, continuous, and complementary to Curative Care. It is practiced by an interdisciplinary team following the diagnosis of a serious, progressive, or terminal illness —in a formal institution, as well as at home.

1. A different system of healthcare
2. One of the countries that started the Palliative Care movement
3. Number-one-ranked healthcare system in the world as of 2000 W.H.O. study
4. A compelling system of Palliative Care

Templer Death Anxiety Scale (DAS)

Male = 2
Female = 27
Average Age = 41
Range = 28 to 64
Social Worker
Years of Education after BAC?
Range: 0 to 8+
Median = 4
Researcher
PROFESSION?
C.N.A.
Student
Formal Training in Palliative
Care?
Yes = 17
No = 10
N/A = 2
How many Palliative Care patients have you cared for in the last 2 years?
None = 9
More than 20 = 19
N/A = 1
Librarian
Psychologist
Other
Nurse
Doctor
Where have you been exposed to Palliative Care?
Hospital = 11
Patient’s home = 11
Office = 11
Personal life = 3
Research = 1
How important is religion in your life?
Not at all = 7
A little important = 9
Important = 8
Very Important = 3
N/A = 2

DAS Score vs. Number of Responses n = 29
Average DAS score (of the sample) = 5.74
Average DAS score of population = 5.75
Range = 2 to 11 (0 to 15 possible)
6
5
4
Age ≤ 40 vs. Age >40
5.17 vs. 5.63
3
2
Catholic vs. Atheist
5.30 vs. 5.20
1
0
0 1 2 3 4 5 6 7 8
DAS Score
9 10 11 12 13 14 15
Religion not important vs. Religion important
6.00 vs. 6.00
Cared for 20+ P.C. patients in past 2 years vs. Cared for 0 P.C. patients in 2 past years
5.60 vs. 5.70
Formal Training in P.C. vs. No formal training in P.C.
5.05 vs. 6.25
p = 0.12 > 0.05

1. Please recount one patient that you have cared after.
- Tell me a little bit about this patient.
- Do you think this patient had a positive experience with the Palliative Care that he or she received?
- How would you describe his or her attitudes towards end-of-life?
2. What personal qualities or life experiences do you think are necessary for a patient to not be in psychological distress at end-of-life?
3. Do you think that your work in Palliative Care has changed your beliefs, thoughts, or opinions on end-of-life?
4. Are you afraid of dying?

1. Please recount one patient that you have cared after.
- Tell me a little bit about this patient.
- Do you think this patient had a positive experience with the Palliative Care that he or she received?
- How would you describe his or her attitudes towards end-of-life?
“There was one lady [who] asked for euthanasia.
Usually when we work with patients that request euthanasia, the request falls away. But with this highly intelligent and cultured lady , the request never left right to her dying day .” – L.C.
“It is very difficult to know, but positive things did happen …her husband received support that was definitely helpful to her anxiety. She was always worrying about him.” – L.C.
“All I can say is what she told me… as long as she had some independence and could do the things she enjoyed doing, life was worth living to her …she was subscribed to a small concert hall in her small town [and] she would go regularly. Then came a time when…she couldn’t do that anymore which just reinforced her request for euthanasia. But there was certain serenity to it too .” – L.C.
“ Before, people could mourn and see their loved ones for days after they died . Nowadays we tend to hide the dead away , we quickly bury them, and put the cemeteries out of sight. You aren’t able to know, you aren’t able to see…and at the end, we see dead bodies as shown by the media . It is truly horrible. Thus, we choose to avoid it.
In a way, people may not be scared of dying, but rather of their death being a spectacle , a show .” – V.Z.

2. What personal qualities or life experiences do you think are necessary for a patient to not be in psychological distress at end-of-life?
“There has to be a perception of security
…there has to be a person or several people that will be at the patient’s disposition throughout the trajectory of their illness. It is necessary to eliminate the fear of abandonment . No matter what arrives, one must know that there will be someone there. This thought is immensely powerful. With this, you can face anything….The most important thing is to not be alone .” – Madame F.
“…The patient [must] know that if their suffering becomes too great, they have the option of sedation . This does not provoke or precipitate death. This allows the patient to be comfortable . If you end the sedation, the patient would wake up. However there are some people who prefer to suffer .” – Madame F.
“ Previous deaths that they have witnessed or were involved in definitely have an impact . [A death] that has gone ‘well’ and they have been able to bereave properly will have a positive impact. I suppose those who are able to confront death, or see death as part of life…they seem to go into it peacefully .” – L.C.
“ Age can have an impact on it, but not always. I have accompanied young people with young children where every ‘i’ has been dotted and every ‘t’ has been crossed … these people have really good, quality time with their families.” – L.C.
“Sometimes people can be helped by their religion, sometimes it can have a negative impact .” – L.C.
“I think that isolation, not being surrounded by others —everyday and towards the end—is difficult.
[It is hard] when there are not connections to people, because you wish to feel indispensable and important .” – V. Z.

3. Do you think that your work in Palliative Care has changed your beliefs, thoughts, or opinions on end-of-life?
* “Absolutely, yes. I don’t want to go to my deathbed with regrets (the regrets you can do something about). The ones you can’t do something about [I hope] to come to peace with them .” –L.C.
“I’ve thought a lot about my living will , knowing that can completely change. I have two close friends and between the three of us, we talk about it all the time. A doctor, a psychologist, and a nurse .” – L.C.
“It has certainly made me a less judgmental person . Everyone comes to a certain stage in their lives with a certain story, and we don’t know that story .” – L.C.
“ I’ve lost materialism . It is null. I’ve changed priorities. I prefer relationships . Also, this has opened my eyes to the impact of illness. It has made me appreciate the quotidian things , more and more .” – V.Z.

4. Are you afraid of dying?
“It is not death that scares me. It is what comes before death …the condition of dying scares me. Luckily, there are steps that one can take to ensure that one is comfortable at end-of-life. Make arrangements .”—Madame F.
“I don’t think so…I’m not ready to die, I want to live my life, I’ve got a lot to do and lots to live. But actually dying, no, I don’t think so. I like to be able to think that I can have a serene approach. Obviously it is going to depend on the circumstances. Since I was small, the subject of death has been a topic of conversation in our household. It’s not like we talked about it a lot, but there was always a lot of humor around it. It’s such an unknown subject. I have a strange curiosity about it, actually…I’m curious to find out .” – L.C.
“ I’m not of afraid of my death, but that of my loved ones , those close to me, yes. More and more. When I started this work, I had recurrent nightmares where I saw loved ones--my sister and my family —with terrible illnesses and disfigurements. It was scary. But me, I was always fine. I think working so close to death everyday makes you a bit immune.
You worry about your loved ones, but not yourself. It protects you. Knowing protects you. You appreciate your own body more. You pay attention to it. But I’m not in my loved ones’ bodies. I cannot control their health and illness .” – V.Z.

End-of-life is an immensely individual experience.
Some of the most important factors that determine a person’s experience with their end-of-life are: previous experiences with death and dying, support from friends and family, and ability to communicate about what is happening to them.
Sometimes, fear of death is actually fear of suffering, fear of loved ones’ deaths, or fear of a spectacle. It is multidimensional.
As healthcare providers, we carry an important responsibility.
It is possible to die living.
High quality, interdisciplinary Palliative Care is vital….and powerful.

Thank you!
Dr. Arthur Daemmrich
The Clendening Summer Fellowship Advisors
The Office of International Programs
Dr. Ivan Damjanov
Dr. Deon Hayley
Dr. Lindy Landzaat
Dr. Bruce E. Hayes
Madame Marie-Odile Frattini
Centre National de Ressources Soins Palliatifs
La Fondation Œvre de la Croix Saint-Simone
Institut Curie
Deep thanks to all of the participants who agreed to share their voices and experiences with me, and all of the patients and families who allowed me to enter their world.

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