3 February

Cheering (And Bleeding) This Morning For Life

by Jon Katz

I need to be honest and concede that yesterday shook me up more than I realized.

I was up all night going over the awful plight of a friend, who was rushed to the hospital, is in intensive care and was more coherent when I spoke with her last night. And I was going over my role in the day, which I wrote about.

I had no idea how sick my friend was, she didn’t tell me and I hadn’t seen her or spoken to her in months. Our relationship was complex, I care about her.

I guess I know how these things work by now.

The hospital will stabilize her, which is their specialty,  and she will almost certainly be sent to a rehab facility. We are taking steps to find a foster home for her dog.

She does have the right to say no to further care; I hope she seeks help if she does get home. She is alone by choice.

The social media second-guessing arrived just on time this morning. One woman, a friend and hospice nurse,  criticized me for not bringing hospice into the situation right away.

In the interests of fairness and transparency, and because this is so complex an issue, I am reprinting most of her comment here, it might be useful to people, even though I find it unfair and short of facts:

Clearly this woman needed help but in my mind, she could have received help from Hospice care. She wanted to stay at home to be close to her dog in the comfort of her home. Anyone can make a referral to Hospice, had you called a Hospice they would have sent a nurse to her home to assess her needs, get doctors orders to make her comfortable, set up a home health aide to care that would attend to her bodily needs and come to her home on a regular basis. She could have stayed home in comfort and could have been with the dear dog until the end.”

“Now she is in an ICU away from everything she loves. Hospice care is a Medicare benefit; now, she will be charged large sums of money she will not be able to pay.”

I believe this person might well be dead if she hadn’t gotten to the hospital, a feeling a nurse at the hospital seconded.

She has not asked me to take over her health care, and I have no right to do that. Hospice is a decision she must make for herself, hopefully, with a family or a close friend, she has friends with whom she is much closer than me.

I mentioned it to her yesterday, and she said no, clearly and without hesitation. It is not for me to tell her she is dying; I don’t know that. I am not a doctor; I have no diagnosis about her illness beyond what she told me and what I saw.

And the dog urgently needs a new home, temporary or permanent. She is not able to care for herself or her.

I have no regrets about getting her to the hospital. But everybody as a right to their opinion, and it is important that people understand the choices they can make about the end of their lives.

My friend is not nearly ready in her head for hospice. She won’t even admit she is ill.

To suggest hospice is a profound shock and reality to people who are sick, and to their families, It should only be done in conjunction with doctors, social workers, and hospice social workers.

And people have the right to say no, which my friend said loud and clear to me yesterday and last night on the phone. I know she has cancer, but I don’t know anything about the details or her prognosis or possible treatment.

I’ve seen people bounce back from awful, even chronic illnesses, and live a long time.

Social media is, as we all know by now, is a blessing, and a curse. I would never presume to make such a personal and absolute diagnosis via e-mail and from hundreds of miles away.

I don’t think it’s ethical, either with dogs or people.

But social media has legitimized the idea that we can sit behind our computers and know what is best for strangers to do. This happens almost every time I write. And with or without social media, I have no right to tell other people what to do with their lives.

I know my friend looked terrifyingly sick last night and I was gratified when an emergency room nurse called to thank me for getting her there.  But the rest is not for me to deal with, nor is it my business.

Several people are trying to out my friend, poring over the blog for clues, etc., I don’t understand why people feel the need to do that. I will not, under any circumstances, reveal her identity without her permission.

If I wished for her identity to be known, I would have published it.

She is aware that I wrote about the incident, which was done with her permission. She does not wish to be identified at the moment, and I do not need to identify her. Who she is is not the point of this story.

The episode struck deep with me, and I am well aware I am not the sick one, this is not my drama. But it raises questions about what kind of person I am or want to be, and about how we make critical decisions that affect the lives of others.

My Libertarian notions about individual choice – people have the right to get sick and die; however they wish, in my mind – were blown to bits when I saw how ill and incapacitated and humiliated my friend was in her condition.

She is a secretive and private person; few people knew she was sick at all; she had been alone for days in a deteriorating condition.

I don’t care to describe those details here.

I got a lot of praise and compliments for what happened yesterday, and I am grateful and appreciate them. But it tore me up.

I ended the day feeling shaken,  unsure.  And I am humbled by life and its sudden twists and turns. My friend has had a hard life, and I wish her peace, comfort, and dignity now.

The message above (the writer is a hospice nurse) seemed arrogant and presumptuous to me, but she had a point. I am no seer; I have no idea whether my friend will live or die.

But I am a passionate advocate for hospice, which helps people to die in dignity and comfort.

Hospice is never a course I would urge on anybody, but I always make it a point to let people at the edge of life know about it.

If it comes to it, they will take good care of my friend, but I also know hospice up here won’t go and help anybody unless there is someone else in the house 24 hours a day.

I did what I needed to do. It’s not in my hands now.

Health care in America is rarely efficient or rational.

I am not a believer in God as advertised in much of America, but I do embrace something a priest in Boston told me when I was a reporter there: “I pray to God, but I am not God, and I can represent God, but I can never do his work.”

Amen.

Photo is of the new Bishop Maginn High School Cheerleading Squad. Cheer for life!

18 Comments

  1. Clearly you did the correct thing for your friend. She needed help immediately and could receive that only at the hospita!. She did not have time for approval and a hospice visit.

  2. Jon and Maria,
    Nicely done under difficult circumstances. That’s what good friends do.
    They know when to step in – and they know when to step back, and let the process
    work through the steps it must. You are good friends. And that is enough.
    Anne

  3. Glad you trusted your gut Jon when you say: “I believe this person might well be dead if she hadn’t gotten to the hospital, a feeling a nurse at the hospital seconded.” I don’t trust that hospice would have been immediate. Ambulance, emergency room and ICU are immediate and life-saving. Hospice can be there for her needs when she gets home.
    I had hospice at my mom’s house during her last weeks.

  4. This reminds me of the phrase, “No good deed goes unpunished.” Thank you for what you did, and I don’t know you or your friend. You acted in her best interests and that’s good enough for me.

  5. Jon, you did the right and humaniterian thing for your friend. Making your own decisions clearly depends upon being in a state of mind to know what you are requesting and she clearly was way beyond this. I hear your pain about the conflicting situation and your deep belief that everyone needs and has the right to participate in their final care (if they can do this). You did the right thing for the right reason. Love your work. Lucky dog that you will find a home for it.

    Im so impressed with the spectacular colors in your pictures. Love your work.

  6. As I see it, no one is given the right to decide how another’s life should be lived or ended, but sometimes that burden is inherited and inescapable. At that point, no one hiding behind the anonymity of a computer screen should find fault with the actions of those who remain true to their principles and simply try to do what is best, or at least that which is least harmful.

  7. Jon, you did right. Social services, ect. can now take over. I am an ER nurse and family, ect. are a liable to complain no matter what you did.

  8. I think telling someone how they should have reacted to an emergency, after the fact, is pointless and unkind. You made the best decision that was available at the time.
    Your friend can hopefully be stabilized in the hospital and professionals can help go over the options opened to her. But, neither your friend or her dear dog are suffering alone and both are being helped. That is a wonderful thing.

  9. I do not believe there are right decisions or wrong ones, there will be consequences for both,…. how you feel once you make your choice is what counts. Pretty sure you know that already, sometimes it helps to be reminded.

  10. Thank God you followed your gut; ambulances, emergency rooms and ICU’s are for immediate help. Hospice is
    great, I used them during the last few weeks of my mom’s life, but it all takes time to set up that I don’t believe your friend had. They can be there for her when she leaves the hospital.

  11. Jon, you did the absolute right thing. I have high respect for Hospice (Don was on it for 17 months) and I hope she will consider that when she leaves the hospital, but the place she needed to go yesterday was the hospital emergency room, and thank God you accomplished that. I agree your hospice nurse friend’s message seems very arrogant and presumptuous. The poor lady might have died waiting on Hospice to arrive and evaluate, and might then have been told they could not help her at home since she has no one there with her. This story affected me greatly too, and I could not even sleep last night. I too live alone now and I plan to put some things into place after reading your story last night. God bless you – you did a good work for Him with this situation. Thank you.

  12. It struck me as gut-wrenching, Jon for both you and Maria and a very difficult situation to handle. It there are other, closer friends, it seems unfair that it was brought to you, but that is not my business. I feel for your friend, most particularly because of the dog. As you probably know, I once had a situation where a beloved dog was separated from its owner and for that reason as well as others, this story hit home for me.
    It is very unfair for anyone to criticise what you did with or without the facts. I am not surprised it disturbed you but I hope you and Maria will return soon to a state of peace. Which is what you so deserve. God bless (That’s an expression I should stop using because I am not a formal “God-believer, but I don’t know how else to say what I feel.)

  13. Making decisions for others at end of life is fraught with “what ifs”. Your friend was fortunate you cared enough to go and help her. You did the right thing.

    Sometimes judgments are made by others without all the facts in hand. It is never just black and white.

  14. Jon, you did the right thing. Nobody has the right to criticize anyone else. I have learned in my 62 years of life that you don’t criticize anyone until you’ve “ walked a mile in their shoes”.

  15. I don’t know how anyone can presume that this lady was in need of hospice care? she needed to be evaluated by a physician first..not hospice first, and it is too bad that the hospice nurse decided over the internet that was the care she needed..maybe in the end it will be, but any person arriving on the scene of someone that was ill ( no matter what illness) and could no longer look after themselves physically or mentally, needed help beyond what friends or family could do in an emergency. There are also laws around mental competence and also around animals and the rights they have to be cared for..so you could/should not have left either in a home with full knowledge that they could not make decisions for their own welfare. There are so many medical conditions that leave people temporarily unaware of their needs..medical help can rectify this sometimes..but as no dr was on scene to make that evaluation, your choice was very clear, as well as your human responsibility..popular or not with the SM trolls..

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