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There’s No Spice Like Hospice April 29, 2012

Posted by ijwoods in Blog+.
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I can’t remember how many years I’ve said to friends, including K, that when it comes to dying I’m going to do it at home or in some desolate cabin in the forest. The thought behind those statements never went very deep and was always based on some romantic image I have of being alone, peacefully going within, uniting with God and never returning.  I know I’m not the only one with those sentiments since I’ve heard it from quite a number of other people as well, sans the uniting with God bit. But now having lived through an EOL experience at home I have a more complete picture, particularly for the longer term situations. I still feel the same way about dying at home, and maybe even more so, but realize that some preparation and realities are in order.

K was very clear she wanted to go through the dying process at home. It was more comfortable, humane and since I work from home there would always be loving, responsive company. We did some research and tried best to understand how the cancer would affect her over time. The doctors we asked didn’t provide a lot information about what to expect outside of, “she will get increasingly tired and then pass away”. A lot was taken for granted by them about what we knew. The best advice finally came with a friend, also a doctor, when we asked about what we can expect and what to prepare for. He simply told us “It’s time to start looking into getting hospice care.”

I of course heard of hospice but it wasn’t until I began to look into it that I understood what it was. Like many others, I thought it was a building where someone is dropped off and is taken care of during their EOL process. To some extent that is true, but I didn’t realize that a key purpose of hospice care was for dying at home or in a homelike environment. Here’s a nice definition I found from the Hospice of Southern Illinois,  “Hospice is a special healthcare option for patients and families who are faced with a terminal illness. A multi-disciplinary team of physician, nurses, social workers, bereavement counselors and volunteers works together to address the physical, social, emotional and spiritual needs of each patient and family. The hospice team provides care to patients in their own home or a home-like setting regardless of the patient’s age or ability to pay.” Hospice actually provided us with a team of people who monitored K by coming to our home. They even kept their eye on me! The advice to get hospice help didn’t come a moment too soon since K was deteriorating rapidly at the time.

Our main doctor had to put in the request for hospice services and after arranging an appointment we were treated to several visits by administrators to explain what it is, how they work and what to expect. I almost cried with relief during those visits because it was clear I didn’t have to navigate my way through this alone and would have expert help. I above all wanted K to feel secure and that she could go through her process without worry.

Around that time K’s needs were quickly moving away from normal daily schedules. Things were happening to her that I didn’t know how to address or even what it meant in terms of seriousness.  I was beginning to understand that I was a total amateur in a situation that needed real professionalism and experience. I was elated to learn that the services of the hospice team were available around the clock. The first thing that struck me about the people I met was how they absolutely loved what they were doing. These were people who exuded an amazing energy and compassion. I felt like I stepped into a world of magic, because for them it was magic. They were seeing the dying process play out almost every day and it was, as one person put it to me “as amazing as birth”.  These people were living on the edge of life everyday and watching as people moved into the unknown, yet there was a pattern and a sweetness to it as well.

Hospice was an incredible blessing for K and me. Our idealism about dying at home was fine but without hospice I couldn’t have made it through as a caregiver and I am sure the experience for K might have been frightening at times and nowhere as comfortable or reassuring. Potentially it could have been horrific. The nurses were very clear about their practice of palliative care and did it with consciousness and concern for the individual. They knew what it took to provide comfort and allow someone to move through their journey with as little physical distraction as possible. They would not escalate the type of medication needed without certainty that the time had come. When, what I considered, odd things began to take place, they had seen it before hundreds of times and could handle it with grace.

At times a nurse, other than our main one, had to come over because of the timing. In that type of situation you fear of a lack of synchronization.  What was impressive to me was the way they diligently took notes of every session, entered them into a shared data base so that any other person on the team could be up to date as to what happened last. They even met as a team with the doctor on a regular basis to go over the status of every single patient.

I was considered part of the hospice team as the designated primary care giver and I am forever grateful that once they got involved I never felt alone or unsupported. Despite the fact that these nurses were working with quite a number of cases they never showed a lack of patience, lack of responsiveness or a dark side.

I can’t say enough about my experience with the people from hospice. I’ve heard them referred to as angels, and indeed they are. Even to this day the hospice stays in touch with me to see how I am doing and to remind me of grief support groups meeting around the city. Hospice made it possible for K to get her wish of passing away at home with comfort, gracefully and with dignity.

I have to give a big shout out to the people from Family Home Hospice here in Las Vegas, I could never thank them enough for going above and beyond what could be expected of them and for caring so warmly and diligently for K and myself.

Comments»

1. bethhavey - April 29, 2012

Wonderful pice, very insightful. Thank you for sharing this with people and giving them comfort. It comforts me.

ijwoods - April 29, 2012

Thanks for your comments Beth. I can’t even begin to imagine what things would have been like without hospice. It frightens me to think that all the way up to K’s last 2 months I still didn’t understand what role they could play. I’m incredibly grateful that such a wonderful thing exists today when health concerns can seem so business-like and profit oriented. I don’t mean to say hospice isn’t run professionally, but they really bring a strong sense of humanity to their work. Hospice makes dying at home with confidence, and amongst loved ones, possible.

2. bethhavey - April 29, 2012

Very insightful and helpful to people who are going through the same thing. My mother is receiving hospice at the home where she lives and also gets a visit from a deacon affiliated with hospice. This brings her great peace. Beth

3. Keri Shaw - April 29, 2012

Very well written. You truly captured the essence of what hospice is and what is does for everyone involved in the care and EOL process.

4. Chris de Boinville - April 30, 2012

Dear Ira,
I hope you received my story about one of my first hospice cases-and will consider using it.
Fondly,
–Chris de Boinville

ijwoods - April 30, 2012

Hi Chris, it’s good to hear from you. I haven’t received anything. Where did you send it?

5. Chris MacLellan "The Bow-Tie-Guy" - May 1, 2012

One of the most meaningful experiences I have ever had in my life was my summer internship with Hospice of Palm Beach County a few years ago. Before I I started my Clinical Pastoral Education course, I was not well informed about the true meaning of Hospice. By the time I was finished with the course, I had a complete transformation in my thoughts about the true meaning of the transitions of life.
While I learned that working in hospice is a special calling for physicians, nurses and those in pastoral care, I also learned that just as we can not do life alone, we can’t do death alone either.

Thank you for your beautiful post!
Chris

ijwoods - May 1, 2012

Chris, did you ever write about your internship experience in The Purple Jacket? I’d love to read it. Thanks for your kind note.

Chris MacLellan "The Bow-Tie-Guy" - May 1, 2012

Greetings, I think I have only referenced my CPE Hospice experience in a couple of my posts, but that would be a great experience for me to write on. Thanks for the wonderful idea…Keep in touch!

6. kate harmon - May 1, 2012

I was so touched and moved at your article-my name is Kate Harmon and I have run Family Home Hospice for almost 6 years. The very last gift you can give someone is the gift of hospice-you have done an incredible job in bestowing all your love and caring on K and we at Hospice are grateful for allowing us to share in that journey. Thank you, thank you, thank you.

7. Pam - November 16, 2012

Ira,

K was so fortunate to have you there for her, attending to her requests for a humane dying process at home.

Ten years ago my father also requested a humane dying process but was more comfortable in the nursing home setting. Hospice was a huge help to our family, even in the midst of the strange smells, strangers and noisy hallway interruptions, he gracefully left his body with ease. I was honored to be at his side holding his hand, with the hospice helper nearby.

Sending hugs,
Pam

ijwoods - November 17, 2012

Hi Pam, it’s always a pleasure for me to hear from you. I like your wording, “humane dying process”. It’s interesting to think that for many people in the past dying at home was the norm. Surrounded by family and friends, in a familiar setting, allowing life to end as naturally and gently as possible. I think it’s great to see this sort of understanding and movement growing.

8. Sally Richman - November 16, 2012

Ira, it was so beautiful to read your thoughts and experience, and to feel the overriding gratitude during the most dire of circumstances…it shows that Grace does not desert us, if our hearts are open to help. I’m so glad for you and K, that you found the help that was most meaningful during that time! The comfort of hospice care is almost inestimable when we are facing and feeling so much loss. I know you will always be connected with K, and that one day, I believe you will be together again! All our love to you, Ira! Sally and David

ijwoods - November 17, 2012

Hi Sally, you are so right, Grace does not desert. Even in dying there is a kindness I never realized existed, that makes it so gentle. Of course we had a good environment and without the people from hospice I don’t think it would have turned out as graceful. Give my best to David.

9. Sue Felton - November 16, 2012

Dear Ira, I just read your blog and feel very grateful that you had such a good experience with hospice. I now work with a group of palliative care providers at the U. of Colorado and they are awesome. When (and if) I ever retire I hope to get involved in a more patient centered way with pallaitive care and hospice. It makes such a difference. And, as a final note, I bet those people had no idea what a great keynote speaker you would be! I always so enjoyed listening to you speak!! I hope I’ll run into to you one of these days Ira. Sue Felton

ijwoods - November 17, 2012

It’s great to hear from you Sue, and thanks for the nice comment. Hope all is going well in Denver, I’d love to talk to you some day about what you are doing.

10. Leslye Deitch - November 17, 2012

Dear Ira, I also feel very moved by the article you wrote about Hospice. I recently had a close girl friend who passed away from Cancer and in all the confusion of meaningful friends and relatives, they brought a calmness and dignity to the process of EOL that wouldn’t have been there otherwise. It’s comforting to know that there are conscious, loving people who give so generously of their time and energy to help people transition through one of the most tender and vulnerable moments in our lives. Hope you are doing well…someone once wrote: “may your heart mend and your memories stay strong”. I think that’s a beautiful expression. Leslye Deitch

ijwoods - November 18, 2012

Hi Leslye. Thanks for your comment. As I mentioned in the post I really had almost no idea what it was hospice did. The people I met who provided the hospice services were just incredible. I didn’t get the feeling from any of them that they were going through the motions of doing a job. They were very present and caring throughout it all. Even at the point where Kris couldn’t communicate effectively, you could see on her face how comforted she was to see them. The heart is mending but sometimes the memories seem too strong.

11. Alan Roettinger - November 19, 2012

Thanks for this, Ira. I had the privilege of providing hospice care for my sister during her the last month and a half. Those were among the most profoundly beautiful days of my life. I learned that death is nothing to fear, that it is indeed every bit as miraculous as birth, and that it should be protected as a sacred event, so the dying can have as smooth a departure as possible. And so the living can witness the beauty of life’s exquisite design–and so they can feel they’ve done their best for the ones they love.

ijwoods - November 19, 2012

You don’t mean Deborah, do you? I had the same experience Alan – nothing to fear. Very graceful and kind. It’s as if the body and mind are slowed down to take it in and go with it without fear – at least in the cases of our experience. Good to hear from you.


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