The following is a case study from the end of life doula certification course.
Joe is a 54-year-old male that has recently been discharged form LGH/Penn Medicine in Lancaster. Recently he had an ICU stay, where he learned that he has Stage 4 liver and pancreatic cancers. The social worker has put Sandra, Joe’s girlfriend in touch with Hospice Care of Lancaster County. She has also given Sandra contact information for Compass to see if Joe can receive emergency SSI. The hospital has agreed to do paracentesis 2 x a week and Hospice will provide transportation through Red Rose Transportation. This gives Joe and Sandy some relief knowing that Joe can still get treatment. I was contacted by Jamie at Hospice because she sees that Sandra is overwhelmed trying to do everything herself.
Initial phone call : October 2, 2022
I reached out to Sandra via phone, to set up a meeting the next day with them both.
Initial meeting: October 3, 2022
I went over the meet Joe and Sandra face to face. Sandra prefers to be called Sandy.
We went over the medical information, the hospice team, doctors, medications, and medical history. We discussed the disease process and what could happen quickly in the next month, the treatments that the hospital will be providing, and the urgency of time.
I learn that Joe’s parents and sister live close by and are not involved with care.
In fact, they are in denial that their Joe has terminal cancer. I ask Joe if he thinks that they would speak to me about his condition. He agrees and wants his parents and sister involved in what time is remaining.
Although Joe has no money, I go over the contract with them. (Because Joe has no insurance, I decide to help Sandra as much as possible giving her the resources that she needs, knowing that the patient probably cannot pay.)
Before the Care plan meeting: October 4, 2022
After our initial meeting yesterday, I reached out to the Grace Brethren Church to see if they could help with a volunteer for spiritual comfort for Joe and Sandy. This is in addition to the Hospice volunteer that has been set up. The Hospice volunteer helps Sandy be able to run errands such as grocery shopping etc.
Care plan meeting : October 6, 2022
Decide to help them with Advanced Care, and some paperwork for Funeral care such as obituary, delegating Companion doula responsibilities to volunteers. Discuss the fact that Joe is low on cash, and how this affects my time and participation.
Have HIPPA, Liaison forms to be signed.
Leave copy of Five Wishes for advanced care directive for Joe and Sandy to discuss.
Explain the form to them. After this visit, go to see Joe’s parents and sister.
Plan to return the next day for completed FW form and talk about contract.
Phone call to parents: October 6, 2022
Reach out to Joe’s parents and sister, they agreed to a meeting the next day.
Visit to parents: October 7, 2022
I explained to them how important it was to Joe that they are in his life during his last days. I talked about having a positive death experience and gave them Barbara Karnes book: a time to live. Netflix “Extremis” to watch together. I left them with no answer on how they were going to proceed.
Phone call : October 7, 2022
Talk to Joe and Sandy via phone about how the meeting with the parents and sister went.
Sandy said that Joe was tired, and could I come back in 2 days for the finished paperwork? I agreed to that and said that I would drop off some literature: Barbara Karnes: By Your Side. Email Sandy contact information for Buch Funeral home.
2nd visit: October 9, 2022
Pick up the paperwork from Sandy. Joe is a little under the weather from his procedure.
Sit down with her and go over the Daily Care plan so that she can communicate with the Hospice team in a consistent manner. She is grateful for all the help. She said that they have not heard from Joe’s family. The church has sent a volunteer, Dan. He has been sitting with Joe talking about fishing. The Hospice volunteer comes twice a week, after Joe’s procedure to help her get him settled. She uses the inhaler for nausea as I instructed and said that it seems to be working.
She said she would call me in a day or two.
Phone call: October 10, 2022
Sandy called me. She went to Buch funeral home. While there she set up the arrangements for cremation. Joe does have a small life insurance policy that can be used to pay for this expense. She asked me about an urn, that they were very expensive at the funeral home. I told her that I could show her the options that I knew of.
3rd Visit: October 12, 2022
Joe has finalized the Five Wishes form.
Sandy is following the guidelines and filling out the Daily Care plan to share with Hospice. She said Joe likes the aromatherapy inhaler and is there something that she can use to get him to relax? I bring in a small diffuser from the car, and my aromatherapy bag. Most men don’t like the floral aroma of lavender, so I use a few drops of frankincense to diffuse. Joe said that he liked the smell, laughing that he didn’t have to smell flowers all day. He said that if there was any money leftover from the cremation, he would like to pay me for my time.
Phone call: October 24, 2022
Sandy called; Joe has drastically gone downhill. She is very upset that Joe’s family still has not come to see him. I told her that I would reach out to them.
Phone call to Joe’s family: October 24, 2022
Talk to Joe’s mother. I told her about Joe’s declining condition and urged her to convince Mike to visit. Relay the information to Sandy. Sandy said that Joe is at peace with the fact that his family might not see him before he dies. Dan has been helping him spiritually and he seems to be in a good place.
4th visit: October 31, 2022
Visit with Joe and Sandy was heartbreaking to say the least. Physically Joe is sleeping most of the time, Sandy says. He did during my time there on this visit. Sandy said that he barely eats. Hospice has decided that Joe’s condition is at the end stage and is no longer taking him for paracentesis treatments.
While I was there, Dan arrived to sit with Joe.
Sandy and I go in another room, where I prepare her for the time ahead by going over the Barbara Karnes book, Gone from my Sight. We talk about how nice it would have been for his parents to see him to say their final goodbyes.
We have the funeral arrangements made, the obituary and urn picked out.
Sandy went with a direct cremation providing her own wooden box from Perfect Memorials. It had a picture of fishing on it with a nice saying. Sandy said that she didn’t have it engraved because she was keeping it and knew who was in it. We got a chuckle out of that and embraced as I said goodbye. I tell her to keep in touch and said I would check in next week.
Phone call: November 2, 2022
Sandy called me this morning, quite upset. She asked if I could come over today instead of waiting until Thursday. Even though it is earlier than I had planned, I make time to visit for an hour late this morning.
5th visit: November 2, 2022
When I arrive, Sandy has been crying. She said that she hasn’t had much sleep and Joe sleeps all the time. She said that he doesn’t eat at all, barely drinks, or goes to the bathroom. Should she try to feed him? She still has a million questions, and she is distraught.
Janice, the nurse from Hospice arrives while I am there. We all have a conversation about the daily care plan. Because Dan is from the Grace church, Pastor Willard has been coming out to see both Sandy and Joe. Pastor Willard hadn’t really been able to talk to Joe, but Dan kept him informed from his previous visits. I took this opportunity to leave. I told Sandy that I would call her tomorrow.
The Pastor and Sandy went into Joe’s room as I was leaving.
Phone call: November 3, 2022
I called Sandy and she said that yesterday was draining. She thanked me for staying with her and apologized for being a pest. I told her that she wasn’t and the fear that she was feeling was normal.
Phone call: November 8, 2022
Janice from Hospice called me. Joe passed away in his sleep at 2 am. Sandy wanted her to call me, as she was talking to the funeral director. I told her that I would contact Dan and let him know. I thanked her for calling me.
It has been 6 weeks since Joe Garmin passed away. Sandy has been in contact with me, saying that she would like to mail me a check for my services. I told her to keep the money, to keep in touch and donate it to Joe’s favorite charity. She said that he didn’t really have one, but because he like to fish so much, she would donate it to the local hatchery that provides the fish for the Lititz Lions.
Joe’s parents and sister never came to visit during his last days.
Since this case study, I have been studying Christian counseling and have incorporated this and aromatherapy into my end of life doula work.