13 February

The Meeting: Playing God. Is Anything Scarier Than That?

by Jon Katz

“I was scared. Do you know what it’s like to hold someone else’s life in your hands? It’s like playing God. Can you think of anything scarier than that?” – Sidney Sheldon.

Today I was in the place I never wanted to be in, and even a couple of days ago I wasn’t expecting to be in. I’m Playing God.

Thursday, we had our meeting with Susan and her doctors and her brother, and there are some seminal decisions to make, and yes, I am scared. And also prepared.

Playing God is, says Ramez Naam, the highest expression of human nature. Life becomes so very real and meaningful. I learned a lot in the past few weeks, and today.

I could sense the mood of the doctors when I came in.

I had seen this before as a hospice volunteer. They were serious, sad, they had no good news to pass along. Few people can hide having bad news. Further medical treatments would be pointless they said, they were at a turning point.

There was a long list of things going wrong inside of Susan. And she looked gravely ill, and was often incoherent.

Doctors rarely say more than that, but their meaning was clear.

Susan is dying. Her kidneys are failing, so is her liver, there is an infection in a heart valve, and she has metastasizing cancer in her liver. Her body is swelling with fluids, and she is incoherent.

A representative from Hospice appeared, and since I didn’t invite her, it was clear the doctors did. The doctors had nothing left to try.

So this is very different than even a few days ago. Susan cannot recover from this, she is failing more and more each day. There is nothing to be done.

Three of us have been asked to be Patient Advocates by Susan. It’s time for us to do our jobs, the light is on us.

The three are Susan’s best friend Donna, me, and her brother Steve, who lives in California and who has not seen Susan in years. He is an awfully nice,  thoughtful, and intelligent man, but he and Susan are not close.

She was very happy to see him, they had a true reunion in her hospital room.

He is sitting with his sister tonight.

He is going back home in the morning.

What does it mean to be a Patient Advocate?

It’s a kind of stewardship. The doctors are free to speak with me and share Susan’s medical information and prognosis. My job is to act in Susan’s best interests.

That can mean challenging her, or it can mean challenging the doctors.

In this case, it means making sure Susan gets the best possible care, that she never goes home to her empty house, that she is made as comfortable and pain-free as is possible.

Donna lives in New Jersey and is caring for her very ill mother, Steve lives in the San Francisco Bay area, he is a successful headhunter for tech companies. I would like to have known him in a different context.

Susan is very much alone now, and for now, I am the one who is here. In a sense, Susan has been alone for much of her life.

I am happy to be that person who is here and to take responsibility for that. Yes, it is draining and awesome, it is also important and rewarding in its own way.

I always guessed that if I was in the business of saving lives I had better start with my own. But I am not in the business of saving lives now, I’m in the business of working to end one comfortably and well and with dignity.

It is very hard to die with dignity in a hospital, no fault of theirs. It is very possible to die with dignity in hospice. It is what they are about.

Steve and Donna and I talk frequently and openly and we have agreed that whatever decisions we make for Susan will be made unanimously, or not at all.

We tried to get Donna on speakerphone during the meeting, but the connection wasn’t working. I called her and filled her in. She and I are in complete agreement.

Thanks for writing Susan, these are the letters that came today.

Her address is Susan Popper, 211 Church Street, Saratoga Springs, N.Y., 12866. Room 309. Thanks for writing her, she loves the letters, it can get awfully lonely in a hospital.

And the time for hand-wringing is over, the time for decisions has come.

Susan’s organs are failing and the doctors said there is nothing more to do for her medically. They invited a hospice representative to come, and this lifted me up, as I am a hospice volunteer and was thinking as she walked in today that Susan desperately needs to be in hospice care, and right now.

She had an awful day or two suffering through painful tests and efforts to drain the fluid that is filling her body. She was talking openly but made little sense. The long and painful night seem to knock her down.

Susan is drifting in and out of consciousness. It is hard to be certain about what she knows or understands.

The doctors – and Susan – have asked me to meet with them and Susan again tomorrow afternoon. My sense is that they hope we can persuade Susan to accept hospice care. I think this task will fall to me.

After the doctors left, I had a long and honest talk with Susan. I told her there was nothing more the hospital or doctors can do for her, and further tests and procedures will only make her uncomfortable.

Her body is too weak for chemotherapy or other palliative treatments.

And the tests make her uncomfortable.

Then I prayed in the car all the way home to make sure that I know to do the right thing. To Play God well and wisely. Susan and I were close at one time, then fell apart. We are close again now.

I appreciate the support Susan is getting from my blog readers. They have offered to adopt her dog, have sent her dozens of letters instantly, they have written me many times in support of this work, have offered to contribute if funds are needed. We have made a difference.

Donna, Steve and I all believe it is time for hospice care. Because Susan is so ill, she can remain in the hospital and hospice can treat her there. But the hospital can’t treat her medically and keep her comfortable.

And there is no way for her to go home.

Up until yesterday, I held back advocating hospice, but the time for that is over, too.      Hospice is now her best shot for having some comfortable and peaceful time.

Hospice also has a special facility in Saratoga, and she could go there if she wished. I asked her if she understood what I was saying, and she said she’d like to postpone hospice so she could take swimming lessons.

She paused and then smiled. “That doesn’t make sense, does it?”

No, I said, not much. Maybe she could shoot for something simpler, like taking some photos and doing some writing, and talking to her friends. Oh, sure, she said, that would be great.

Susan had been telling me for days about her hopes to change her lifestyle, eat healthy foods, exercise more and lose weight.

I smiled and took her hand. “Susan,” I said, “I need you to understand me if you can. There will be no swimming lessons for you. You are not well enough, and there is no time.”

It was a hard thing to say, but it got through. Susan always asked me to tell her the truth. She looked at me, squeezed my hand, and said simply: “Oh. Thank you for being honest.”

I talked with her about time, and I urged her to think about time in a different way. People to talk to, letters to write, phone calls to make, perhaps prayers. I urged her to think about peace and release, and the spiritual side of things.

I told her we were all going where she is going. I told her a lot of people cared about her, and about the very hard life she has had.

But the hard thing about Playing God right now is that when we can finally and honestly talk, I’m not sure at all that Susan can hear or understand me. Life is pig-headed, as she is. It often just won’t co-operate.

So the meeting was, in fact important, and it did make things clear. And the doctors were honest and open. And I believe we do know what to do, the path is clear.

On the Sally front, good news.

Given Susan’s condition, there is no longer any reason for Sally to stay close to Saratoga or Cambridge.

I told Donna she should feel free to give the dog the best home, anywhere in the country, New Jersey, Oregon, anywhere.

She plans to drive up to see Susan next week and bring Sally, so Susan can see her one more time.

We may need to raise some money to get Sally where she needs to go.

Tomorrow, I’ll bring this quote to Susan and read it to her:

Indeed, the truth that many people never understand, until it is too late, is that the more you try to avoid suffering, the more you suffer, because the smaller and more insignificant things begin to torture you, in proportion to your fear of being hurt. The one who does most to avoid suffering is, in the end, the ones who suffers most.” – Thomas Merton.

14 Comments

  1. Jon, this thread about Susan has awakened all the emotions in me that I went thru when my mom (in Florida) suffered a massive stroke – while I was visiting her (I’m in NJ) and left her unable to speak. I know she knew it was me, she knew it was my dear husband when he came to visit and we all knew that she had told us years before that if she ever had a stroke, we should just take her out and shoot her. It was the one thing she would not abide. We followed the hospital’s suggestion that we put her in a stroke rehab facility to see how she did and she basically refused to do anything. Eventually, after 3 weeks, and with the doctor’s advice,, we revisited the situation and I had the “talk” with her. It was the hardest thing I’ve ever had to do; I sat on her bed and told her it was OK to let go; I was fine,, my husband took good care of me, we were all OK and if she wanted to die, it was OK. Within hours, she was having trouble breathing, was taken to the hospital, we were called (thankfully we were only 10 mins away and I was her medical advocate and had all the paperwork), we were able to get her a bed in the hospital, and hospice came for an eval the very next day and by that afternoon, she was in a wonderful hospice facility. She passed 6 days later and we were there with her the whole time. Since she was comatose most of the time while in hospice, I don’t know for sure if she knew I was there, holding her hand, reading to her, playing her favorite music,, but I’d like to think she did know. My husband was by my side the entire time and to him I will always be eternally grateful; he was my rock. Coincidentally today is our 27th wedding anniversary. Bless you for caring so much about a “mere” friend and doing all you have done for her.

  2. Thank you, Jon, for being such a good friend to Susan. There is nothing better than openness and honesty, particularly in a situation like this. I work in home care, in Saratoga coincidentally enough, and I see the dance families do around the topic of death. It isn’t well choreographed, but it’s careful and light. Until it isn’t. Then it can be crushing. Susan’s peace, comfort and safety are most important right now. As her health care proxy, you are her steward in a sense and you are not taking it lightly. Thank you for writing about it, and shedding light on how difficult it really is.

  3. I remember many years ago when a co-worker was diagnosed with leukemia. Almost immediately, people sprang to action–planning fund raisers to help with his expenses. A very generous impulse. But when we learned that his wife (who must have had a psychic gift) had purchased a special cancer policy in addition to his (and her) employer provided medical insurance, it became clear that there was no need to do fund raising. And in the absence of that need, the whole staff was suddenly flummoxed by what they could do to play a meaningful role in the situation. As are most of us, I’m afraid. When busy-ness, planning, treatments all fall away, we’re left with some very difficult choices in how we can be supportive in any sort of meaningful way. I see you navigating a similar path now with Susan and am so impressed with the thoughtful way you are navigating such a fraught situation. Not everyone could put aside their own fears and discomforts to do the sort of advocacy you are now doing. Bless you for doing it, and bless you too for sharing your experience so we might learn by your example. Peace to you and Susan.

  4. I could not disagree more with your comment that its very hard to die with dignity in a hospital. I deal with death and dying every day, supporting patients and their families. We go to GREAT lengths, and much effort to help our patients die with dignity and support their families through the process. With all the problems in health care today, and they are endless, this is not one of them. In fact, just the opposite, hospitals receive reimbursements that are quite highly based on the feedback given by patients and families, so we are under immense pressure to keep families happy. I very rarely work a shift during which I am not part of a team helping someone leave this life with dignity, and we work very hard to provide that. It is quite possibly the most important thing that we do, and we take it very seriously.

      1. There is nothing to argue. When you make mass generalizations, as you are prone to doing, you completely devalue the hard work being done by so many health care professionals. Rarely does a day go by that we are not thanked by family members for our caring, empathy and aid in helping their family members leave this world. So there you go.

        1. Dana, you claim to be more sensitive and caring than me, yet at a very sensitive time, you are hostile and insulting. I have so many messages from health care professionals, just as dedicated as you (just read the posts) who feel very differently about their experiences than you do. I write about my own experiences and observations. I never tell other people what to do or insist that people with other points of view must be wrong. People who claim there is nothing to argue, that they are absolutely right and others are absolutely wrong, obviously don’t want to talk or know how. They want to give speeches. The American disease. I’m happy for you that you are thanked for the good work I am sure that you do.

          So am I, and every day, and by health care professionals just as hard-working as you.

          And you don’t have to venture out, they are right in this space. So what?

          It doesn’t mean I am right in everything I say.

          Why not set up your own blog and write your own perceptions rather than dump on me because I disagree with you. And I do disagree with you, speaking of generalizations. There are great hospitals and hospices, and bad hospitals and procedures. There is no one universal truth, I’m sorry to tell you. I am in hospitals all of the time, and I write about what I see and feel. Why not tell your own story rather than dump on mine? So there you go.

          1. My apologies Dana, I can’t do the snarky social media thing, especially right now…Best wishes to you, this is one of those non-conversations guaranteed to accomplish nothing I’m learning (slowly) to ignore them..

  5. Thank you for writing about this very important part of life.

    I sense that you write as a means for you to process, and by putting it here on the blog, you are giving me a great gift as well. I appreciate this series, and so many of your other posts, for being thought-provoking, challenging and ultimately healing for me.

  6. Peter, the hospice person who helped usher my father into the next world, told me no one had ever told him that Hospice was brought in too soon, but many people told him they felt they had left it much too late.

  7. I know Dana and almost everyone who work in hospitals do their best to make it as if not pleasant, bearable. But it is true that for the PATIENT, there is no dignity in being in the hospital whether you are dying or just ill or injured. The more incapacitated the patient is, the worse it is and I don’t know if it is even possible to change that. It is the nature of the beast. I think it is also hard for hospitals to change their goal of making people well to letting people die in peace. It probably feels like failure even though no medical professional can outwit death. We are all going to die one day.

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