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Hope; A Standard Feature of LIfe? August 21, 2012

Posted by ijwoods in Blog+.
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This past week I had lunch with a couple from my neighborhood. I got to know them about a year ago while I was out for a walk and immediately liked their company. They met K only once, on a day I took her out in a wheel chair to get some fresh air and take in the wonderful landscape of our community.

Over lunch the husband, H, told me about a fight he waged, a number of years ago, with a large cancerous tumor in his throat. His tales of having to suffer through chemotherapy and radiation were frightening and heartbreaking. The upside was that it all worked. He actually beat back the cancer and is still living, and I have to say looking quite healthy. At 70 plus years he looks younger than me.

After he recovered, his doctor told him that before he started treatment he was sure H wasn’t going to survive more than a couple of months. The doctor was surprised and delighted H actually made it through. H said he was glad the doctor never told him because he probably would have given up and just waited to die. That caught my attention. Looking at him, I didn’t believe he would’ve given up that easily. Certainly his wife wouldn’t have allowed him to give up. This got me thinking about whether people do better not knowing their chances of survival and maintaining a positive attitude. Is it a bad thing for a loved one to know they may be terminally ill and have only months to live?

I found some discussion of this at the American Cancer Society site. In one section on attitude and cancer it says the patient’s family “…may feel pressure to keep a positive attitude at all times, which is unrealistic. ….Trying to ignore these feelings or not talking with others about them can make the person with cancer feel lonely. It can also make the emotional pain worse. And some people feel guilty or blame themselves when they can’t “stay positive.”  They go on to say that studies were conducted to determine the correlation between good attitude and surviving cancer. What they learned was that it made no difference. There was no discernible correlation.

I also started to think about this in relation to requesting hospice care. Without a doctor’s recommendation and verification that the person may have only six months or less to live, you may not qualify for hospice care services.  Well, wouldn’t that cause the patient to assume it’s all over and give up? Does accepting hospice care quicken a person’s demise because of how it may affect their attitude?

I looked around for some discussion on this but selected an answer typical to the others I was finding, I took this from the website www.hospice.org (Hospice of Southern Illinois, Inc.) Here’s what it says on their FAQ page:

Is the decision for hospice care giving up hope or waiting to die?

No. Hospice is about living. Hospice strives to bring quality of life and comfort to a patient and their family. Our successes are in helping a patient and family live fully until the end. Often patients will feel better with good pain and symptom management. Hospice is an experience of care and support, different from any other type of care.

I’m not sure that really answers the question, but I couldn’t find anything better. Hospice may be about living more comfortably, but when you’re required to verify but it’s pretty hard to ignore that doctors think you only have months left to live. The question is whether knowing causes the patient to unnecessarily give up. Maybe there are some who would, but I don’t think it’s that easy. I think there is something much stronger going on that tends to overcome the initial shock.

When K and I made the decision to go with hospice care I don’t remember ever having the feeling of giving up from either K or myself, even though we were very clear on what getting hospice care meant. Yes, the prognosis was dire and from everything we read about secondary liver cancer, winning a 100 million dollar lottery was more probable than survival. Yet despite all that there was a feeling of hope. We were hopeful but at the same time prepared for the worst.

One of my closest friends developed lung cancer and fought it tooth and nail even though the prognosis was really bad. The fight came naturally to him.  He put himself through trials of new chemo and other therapies though he was increasingly deteriorating and the treatments were brutal on his body. Even when things were pretty bad and he was incredibly weak, he insisted food be made for him even though he couldn’t eat. He’d take a nibble and that was it; but he was not giving up on trying to nourish himself. Somehow he maintained hope. Then, as his girlfriend relayed to me, one day he told her the time had come for him to give up. It was clear to him. Acceptance set in and he was satisfied that he did everything he could. The energy and will to fight was gone.  The fight naturally evaporated just as it naturally once existed and it wasn’t because of something someone told him. He passed away not long after.

In K’s case, it seemed that simply being alive provided hope and positivity, as if it was built in; as if it was a standard feature of life. Another day to exist was a blessing and it meant anything was possible. Maybe she didn’t do much, but she enjoyed each day as much as she could. I don’t know about her, but I thought all the way until her last ten days that she would somehow kick the cancer because she exhibited such a remarkable inner strength.

Even during the final week her will remained intact. Without eating or taking in any water for 10 days she still managed to stay alive. Each day the nurses showed up, they looked at her in disbelief. I couldn’t understand how it was possible. I thought 3 days without water would kill you; and we’re in the desert! Yet there she was. For the most part she was quite peaceful during that time and even taking a moment here and there to join us with a smile.

Living in the 21st Century we have such amazing technology and access to almost unlimited information, yet when it comes down to it we know so little. We are not given permission with our technology to look on the other side or to really comprehend what’s going on during someone’s last days. We come from somewhere and we go to somewhere. And though I still feel so ignorant about what took place during my caregiving for K, I can’t deny the gracefulness of life that made it a kind experience. I no longer feel the same fear of death as a result. Even though I was there and the hospice was there to help, there was also something greater helping K in a more profound and internal way.  Maybe part of our role as caregivers is to simply clear the way of disturbances so our loved one can do what they need to do, undistracted, in a loving environment.

Comments»

1. Terre Mirsch - August 22, 2012

This is a wonderful post, Ira. I am particularly struck by your final statement “Maybe part of our role as caregivers is to simply clear the way of disturbances so our loved one can do what they need to do, undistracted, in a loving environment.” One’s response to serious illness is unique and yes, as caregivers there is much we can do to support their hope- often by clearing the way. It is not uncommon to see those with illness making certain decisions (whether to continue or to stop treatment) because they think this is what their loved one wants them to do. There is an important role for hope in wellness, illness, and in dying. In hospice, I refer to ‘redefining hope’- if we can reframe our hope, as K did, life can be one of quality, peace, and dignity.

There was a recent article published in the Journal of Clinical Oncology titled “Reasons Why Physicians Do Not Have Discussions About Poor Prognosis, Why It Matters, and What Can Be Improved” (you can access it at http://jco.ascopubs.org/content/30/22/2715). The article debunks the misconceptions that honest communications cause depression, remove hope, or reduce life expectancy. There will always be some people who ‘beat the odds’ and I am glad your friend was one of them. There are also far too many people who endure painful treatments that diminish quality of life and length of life, who were never told that there was another option. I suppose that providing options, choice, and supporting self-determination may be an important aspect of hope.

Thank you, as always, for your thought provoking blog post.
Terre

ijwoods - August 22, 2012

That’s a really good article you linked me to, Terre. Thank you. That’s exactly what I was looking for and lays it out so well. I don’t know if it’s always the case but I was so impressed with life’s strength and hope in the face of the ultimate adversity. I guess we see it in so many ways all around us, but to see it during my time with K is something I’ll never forget.

2. bethhavey - August 22, 2012

You post brings up very interesting points and I agree with Terre, the final statement is profound. Currently my mother is on hospice at 96 with dementia. She lately cannot speak on the phone, yet her caregiver at her facility reports she is calm and still eating the pureed food they give her. In April, when she went on hospice, she was withdrawn, and now with hospice she seems to have a resurgence. The disease progresses and I am on this roller coaster of feelings, but I know she is getting care. I am clearing the way. Beth @ Boomer Highway

ijwoods - August 22, 2012

Thanks Beth, It sounds like your mom is getting some good care. I am wishing you amd your mom all the best.

3. Chris MacLellan "The Bow-Tie-Guy" - August 22, 2012

Ira: Thanks for your beautiful and thought provoking post. Hospice is one of the most beautiful, yet often the most misunderstood program available to us. I learned about the impact of Hospice while completing one unit of Clinical Pastoral Education for Hospice of Palm Beach County in 2004. Through that experience, I saw how the lives of families and clinicians were changed by their involvement with Hospice. Like Caregiving, hospice is a special calling and so important for everyone involved in the transition of life.

When science has no answer to the mysteries of life, we are reminded that it is what is inside one’s heart that is most important. The beautiful care that hospice provides goes far behind that of science. There is something special about being a facilitator of a beautiful sunset to one’s life because that connection comes from our heart!

4. Chris MacLellan "The Bow-Tie-Guy" - August 22, 2012

Reblogged this on The Purple Jacket.

ijwoods - August 23, 2012

Thanks for the reblog and your comments Chris. I get the sense that many people don’t know what hospice is or what it does. Whenever I bring it up to someone I haven’t spoken with before, and who has no experience of hospice, they automatically assume it is a facility to send someone to spend their final days. Kind of like a mini-hospital. Although there is a grain of truth in that they have no idea that hospice makes it possible for someone to pass away at home, where a majority of people prefer to be during their last days.

I also can feel there are some who view hospice as a negative entity akin to a Dr. Kevorkian spin-off and centered on dying and giving up. I just get little flashes of this mentality from some articles I’ve read, although the vast majority of people who’ve experienced hospice services seem to love it. I think a lot more education is needed to help people understand what an incredible resource a hospice team provides us. K really wanted to be at home and I could never have done it well without the amazing and dedicated help of the hospice employees.


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