[In case you’re worried, I’m feeling fine, still have No Evidence of Disease and am not in danger of dying soon. My clinical trial oncologist thinks I have a 75-80% chance of making it to 2016 given the current lung cancer treatment options – longer if new treatments are developed in the next couple of years.]
I have lost friends recently to lung cancer, and fellow patients have been discussing hospice and the dying process in the Inspire.com Lung Cancer Support Community. This got me thinking.
I do not fear death, but I must admit I do fear parts of the dying process: stuck in bed, unable to express my wishes, being totally dependent on others to take care of my basic needs. I watched both parents die of dementia, and I know they did not want to go that way. I don’t either.
I’m trying to do my thinking about the manner of my death now when I’m relatively clearheaded and comfortable, because I want to explain my wishes to my family in advance. The problem is that none of us can know for certain what the manner of our death will look like. My lung cancer might return only in my lungs and gradually steal my breath; that can be controlled by pain meds. However, I might experience substantial brain mets or oxygen deprivation that could impair my thinking and gradually take away who I am. That second scenario is the one I fear most. I fear its impact on my family, who would have to watch my cognitive decline as well as care for my physical needs. Losing my parents by inches was hard on me and my siblings, and I don’t want to be the source of that pain for others.
While part of me would like to stay at home as long as possible, surrounded by familiar things and people and pets, another part of me thinks the burden on my family would be too great. I’ve seen the physical toll home hospice can take on the caregiver. Perhaps being placed in a hospice facility when the time comes would be a better approach.
I’m lucky to have a third option. I’ve recently been reviewing my state’s Death with Dignity Act. Under this law, terminally ill patients have the right to self administer meds that will end their lives. Maybe I’ll throw a party to say my goodbyes, then go home and decide the time and manner of my death myself. Yet … are there existential consequences for messing with the Fates timelines?
The angst continues. At least I have choices.
Gray Connections 
This is something that wanders through my consciousness from time to time, and I don’t have any concrete answers. I have been reading over last directives and living wills, but actually having a conversation about it hasn’t happened yet. I’ve been hearing a lot about death parties, where people gather friends and family for a dinner or a party and discuss what it is they want when the time comes to die. Yes, we have choices.
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Share your pain! The trouble with self administered mets is getting the timing right – not too soon, not too late. It’s illegal in Australia (no dignity here), but I do have my standby hoard of mets. The other, informal, option is ensuring your doctors know that pain management is your highest priority. They know what that us code for.
In terms of care I decided early in the piece that I did not want to be cared for by loved ones. Off to hospice for me. Some gave said that this is a selfish decision, and that my family shouldn’t be denied the opportunity to look after me. I say rubbish!
Gail
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Even folks without cancer should think about how they want to die and make sure their loved ones know.
On similar note…have you read The Fault In Our Stars by John Green? It’s an excellent book about two children who meet in cancer support group. It acknowledges are those cancer foibles and then plays with them. I loved it.
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Wow Janet. This is an incredibly courageous piece. I know Dan and I discussed his wishes early in the lung cancer journey and I was able to take care of him the way he wanted, at home till the end. Also, Dan did not want his children (they live in Florida, I’m in CT) to see him when he was debilitated. Knowing this I was able to arrange a visit just before he really deteriorated (he had decided to stop treatment). It was a great visit. They were able to look at pictures, talk about all of their most vivid memories and share their love. I’m glad Dan was able to tell me what he wanted. It was an honor and a privilege for me to take care of him throughout the whole journey.
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The Fault in Our Stars will also be a movie out later this year. Shot in Pittsburgh last fall and it looks to be excellent.
I’ve been thinking a lot today about Ariel Sharon, who spent his last 8 years on life support. I do not want to exist like that. I’m reasonably healthy and not all that old but I’ve had surgery twice in recent years so I’ve signed final directives because I don’t want to go like that.
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Such a brave post! I, too, want to make that decision about when and how I shuffle off this mortal coil. It’s probably the most selfish thing we have to contemplate, but it should be completely our decision.
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I understand completely and my sentiments are identical, since I’m in the same boat, . . . except that I don’t live in a state with a logical perspective on letting terminal patients to choose the point in their progression for their inevitable end nor the manner.
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I was trying to discuss same thing with husband today. I need to get my affairs in order. So many Inspire situations lately have caused me great concern. Thanks for sharing your thoughts with us♥
Claire
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I did not know Washingtonians had this option. Thank you for sharing this information. Your writing is more beautiful now than it has ever been. Really moving discussion.
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I have a list of criteria in my phone: Is there joy? Can I read? Can I write? Can I teach? Can I effectively parent my daughter? Do my partner and daughter benefit from my life continuing? Can I visit with friends? Is the pain tolerable and/or manageable? If few or none of those criteria are met, is there a preponderance of evidence that they can be met again in the future as a result of treatment, rehab, or developing new skills and strategies? (Not “is there a chance,” but “is there a preponderance of evidence.”) If not, please let me go.
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I love your writing Janet. Having lost my dad to dementia after caring for him for years, your concept of “losing him by inches” certainly struck home. You bring up such food for thought. I’ve often thought that if – heaven forbid – my husband were to get dementia or some other long-term illness, that I would insist on taking care of him at home. Because nobody could do it better, right? But you are right, the toll on the home caregiver is enormous and I might be better served, as would my loved one, by utilizing a hospice facility. Thanks for bringing up these topics.
Renee
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