COPD Caregiver Perspectives - Having Hard Conversations

  • This is another in my ongoing series of articles for caregivers of people with COPD. In many ways, our jobs are relatively thankless, aren't they? We're watching the gradual deterioration and fading away of someone we love, often a parent or spouse. Each day, our loved one becomes less and less the person we once knew. The threads of connection become more and more frayed and fragile.

     

    One fact each caregiver has to face is that sooner or later (hopefully much later), we ARE going to lose our loved one to COPD or some complication of the disease. COPD is a chronic, eventually fatal disease. Some people survive with COPD for many years and may even have a high quality of life for a long time, which is great.

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    But at some point, the lungs do give out. I'm at that point now with my mother. To be honest, I didn't think she would live this long, when she started to deteriorate a year or so ago. But -- like the energizer bunny -- she keeps going and going and going...

     

    However, her respiratory condition these days is poor. ANY activity at all is difficult for her to complete without taking breaks midway to catch her breath. She can't even finish eating dinner without taking a break in the middle. In the past year, her oxygen flow rate has been increased from 3 LPM to 6 LPM, without much visible relief.

     

    So watching this reminded me that it might be helpful to share some tips with other caregivers here (and the patient too) on how to have those hard conversations that are so necessary towards the end of life. I'll be honest with you; I've often avoided such conversations... but they are necessary.

     

    Talking About Death with Your Loved One

     

    It can seem almost like a betrayal to acknowledge that death IS coming and to want to talk about what will happen with your loved one. You might feel as though talking about such things means you have given up on the person... or that you think they should give up.

     

    But try to look at it differently. Despite the fact that we live in a death-denying culture and that the medical establishment tends to hold out unrealistic hope, even in the face of blatant contradictory evidence, we can and should talk about death and the dying process. Doing so can be one of your final gifts to your loved one.

     

    One story I read talked about a wife who, when faced with an emergency and her husband gasping desperately for breath decided to put him on a ventilator -- even though they had both previously agreed in a general way to avoid extraordinary measures (and machines) at the end. As a result, the husband died afraid, unable to speak and with his hands tied to the hospital bed. His wife was unable to even get close to him, what with all the tubing and machines. Not how they had planned it.

     

    But the problem is, that though most people say they don't want death to be prolonged or to be hooked up to machines when there is no hope, they also don't really know what it will feel like to be dying --or what alternatives there might be. As I discussed in this article, you don't have to die from COPD, gasping for breath. There are medications that can ease the way, while still allowing a dignified and non-machine-controlled death.

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    Besides not knowing quite what to expect, people also often have unrealistic expectations that death will be completely peaceful and easy, as it is in the movies and on television. Unfortunately, it's not always that easy.

     

    So, it's important to talk with your loved one about all of these issues... as soon as possible, before it is too late. Here are some things you should think about discussing:

    • What kind of measures do they want to be used when death is near? Only comfort measures? Every conceivable treatment? Something in between?
    • Have they discussed alternatives with their doctor? Is the doctor on board with the plan? Would hospice be a viable choice?
    • Do they want to die at home or be taken to a hospital or some kind of in-patient unit?
    • Is there a living will in place, and if so, where is it? Is it on file with the doctor or any health professional involved in the care? Does it cover specifics? Are you, as caregiver, comfortable in going along with the living will if your loved one is no longer able to speak for him/herself?
    • Do you know what your loved one's wishes are for what will happen after death? Burial or cremation? Boisterous wake or solemn funeral ceremony?

    These are just a few suggested questions to stimulate discussion. There may be other things you want to talk about. The important thing is to start talking about these difficult issues now, while you still can. I know that's what I've been doing.

Published On: September 14, 2010