Archive for March, 2016

posted by Amy on Mar 21

I’ve been my younger sister’s court-appointed guardian since June, 2007. She has multiple sclerosis, and she’s chronically mentally ill. She had her first psychotic break in 1981, when I was pregnant with my second child. She had her first and only child in 1984. I ended up raising that child. The guardianship arose from my sister deciding, in 2006, that she had been miraculously cured of all her ailments, including myopia. She threw away her glasses and quit taking all her medications. She ended up in a totally inappropriate short-term rehab facility, there being no long-term psychiatric treatment programs in Colorado. And the county brought a guardianship proceeding.

In all that time, I have never been consulted about medical decisions that were made about my sister. One time, when her psychosis flared, she ended up sedated so heavily that she had to be on a respirator to keep her alive. It took a long time for her to heal from the physical and psychological damage that caused. No one even asked me for history or for insight into her behavior. They just went ahead and “treated” with near-lethal sedation.

We’re still in the dark ages when it comes to people whose behavior doesn’t fall within socially-approved norms. A psychological “episode” which could be managed with the proverbial “rubber room” and some prudent monitoring turns into an  excuse to use chemical restraint that almost annihilates the patient. As an older white woman my sister was lucky. Mentally ill people of color, especially men, are routinely gunned down by police in other contexts.

I and other family members noticed a long time ago that steroids make my sister psychotic. Whatever good they may do for her physical condition is more than erased by the damage to her mental state and executive function. I have tried my level best to make sure people don’t give her steroids. I have never succeeded. I’m her guardian, but no one consults with me about her treatment. Early in 2015 she was put on IV steroids for an MS exacerbation. I was not consulted and did not consent. As always happens, that put her on a roller coaster of manic or hypo-manic states followed by depression. There were numerous unpleasant incidents in her nursing home, and a revolving door of hospitalizations. They would attribute her behavior to urinary tract infections, which no doubt played a role. But the main problem, as I kept pointing out, is steroids make her psychotic. Later in the year, she consulted an ear, nose and throat doctor about her TMJ. He prescribed prednisone. More bipolar psychosis ensued. She lost a great deal of ground in terms of cognitive competence and emotional regulation.

She ended up in a very, very depressed state early this year. She started saying she was going to die soon. She even said she was already dead. She said she wasn’t going to live to see her 60th birthday, on February 17. She wouldn’t get out of bed. Forget physical therapy. She wouldn’t do anything at all, not even use her phone. She wouldn’t eat. Sometimes she wouldn’t even talk.

About four months ago I got a call from one of the nurses at the nursing home where my sister lives. She said there had been an “episode,” possibly a seizure, but all the vital signs were fine. Then the nurse started pressuring me to convert my sister’s “full care” orders to “do not resuscitate.” I said I know my sister believes that anything short of “full care” is murder or suicide. It comes from a deeply-held religious conviction. The nurse said, “maybe she changed her mind. People do that.” I said that since my sister was not in her right mind at that time, there was no way to know if that had happened.

About 2 1/2 weeks ago I went to a care conference at the nursing home. My sister had pneumonia, and was too sick to attend the conference. Once again, the subject of DNR came up. This time they said if I revoked the “full care” orders and converted to “DNR” my sister could get hospice care, and Medicare would pay for it. They said the extra level of care and attention might actually help her “graduate” from hospice. I said, again, that as far as I know my sister didn’t want that. Despite feeling pressured to do so, I didn’t change her status. I may have the legal right, as her guardian, to do that, but I don’t think it’s morally right for me to override her wishes. I’m supposed to be her voice, not substitute my judgment for hers.

The night of the care conference my sister was sent to the hospital. They put her in intensive care, on life support (respirator, blood pressure support, nasal feeding tube, lots of monitors and IVs.) After about two weeks they got her weaned off the ventilator and moved to a regular hospital room. They put a feeding tube into her stomach, because she couldn’t really swallow anymore, and that created a risk of aspiration and further lung infection. After a couple of days they sent her back to the nursing home. After just 2 days at home, she was sent back to the hospital.

Her first full day home I got a call from the Nurse Practitioner assigned to her case by her Medicare Advantage health insurer. The call was ostensibly to update me on my sister’s care, but it was really about renewing the push for me to put her into hospice care. The woman didn’t even know enough about the case to realize I’m a relative and not “just” a guardian. It was exceptionally creepy.

Her second day home my sister took a turn for the worse, with symptoms the nursing home couldn’t manage. The nursing home called the Nurse Practitioner, who “refused” to allow them to send my sister back to the hospital. They called her attending physician, who authorized readmitting her, and she went back to the ICU.

I and others who have been in contact with my sister think she now wants to fight. She tried “checking out,” and almost succeeded. She can’t talk, because of the damage caused by the ventilator, but she is much more alert, interactive, and responsive than she was before she got sick. She tries to talk. She makes eye contact. She gestures. She changes her facial expression. She mouths, “I love you.”

If I had agreed to change her care instructions on the day of the care conference my sister might be dead by now. She might die anyway, and that might actually be a blessing. It really sucks to be her. She’s in constant pain. Her body is almost useless. She must be bored and frustrated. Her mind runs amok, and things get even worse when she has an infection. I wouldn’t blame her at all for wanting out. But I’m hoping she’ll get well enough to talk to me about what her wishes are, so I can advocate for her.

After over 8 years of being ignored and circumvented as Guardian, suddenly I’m getting a lot of attention. People at the nursing home who know my sister and care about her think maybe hospice is the best way to go right now. I believe they truly have her best interests at heart. The catch is she can’t have hospice care unless she or I revoke her “full care” orders. Then there are the bean counters who seem to be saying she should go ahead and die and reduce the surplus population. They are so patently thinking about the bottom line, and nothing else, that it turns my stomach. They don’t know me or my sister or our family. They don’t really want to know. Suddenly they are experts in my sister’s life, and mine. That woman who was pressuring me to put an end to attempts to save my sister’s life did nothing whatever to earn the right to take that position with me. It’s the closest thing to a “death panel” I’ve ever seen.

I know intensive care takes a toll. I know my sister was already depleted, confused, and weak when she first went into the ICU. Her resources for clawing back from this latest development are even more depleted. I am pretty despondent about her prospects, but if she wants to fight then I support that. Until I see evidence that she doesn’t want to live, or that it would be utterly hopeless, I’m going to stand firm.

Edited 4/22/16 to correct a misstatement and for clarity.


posted by Amy on Mar 20

She said to me, with a look of genuine concern on her face, “I can’t imagine what it must be like to live in ‘Cancerland.’” She was referring to one of a suite of essays I wrote in connection with a professional evaluation. In it I included quotes from one or more blog posts using that term. Since I often blog about what it’s like to live in Cancerland, I figure either she hasn’t read my blog, or I have not explained it well. As my fifth “cancerversary” approaches, I’ll try again.

At first it was like being yanked into an alternate reality that didn’t make any sense. How could I have cancer? I had done all the things they say you need to do to avoid it. I was (relatively) young. I was strong, healthy, vital. I hardly ever even got a headache. I didn’t even have a pharmacy. There must be some mistake.

Then I became frightened. How would this affect my plans for the future? Did I have a future? What if I died in Boston, thousands of miles from the city I considered home? What should I tell my kids? What should I do? People stepped forward to help me through that first phase. A dearly loved friend with whom I don’t talk much shared her experiences and knowledge. She recommended that I do guided imagery, and I followed her advice. My seminary held a healing service for me. A new friend who had had breast cancer twice said, “Don’t worry about anything until you have to.” And life went on. I stayed in school. I decided to go ahead with plans to apply to PhD programs. I started treatment.

I learned more about breast cancer, not just survival rates and treatment modalities and recommendations for what to do next, but the politics of the pink ribbon. I learned that in some 30% of breast cancers that are diagnosed and treated at an early stage the cancer comes back eventually at stage IV, the incurable stage, and that some 6% to 10% are stage IV from the get-go, as I was. Since some of these recurrences can be up to 20 years out, five-year survival rates are meaningless. I will be a “five year survivor,” but I still have stage IV breast cancer and will most likely die from it one day. That’s not exactly a pretty pink success story for screening mammography. I learned that somewhere around 20% of breast cancers overexpress a certain protein. It’s the kind I have. It’s usually very aggressive, and used to be the “bad kind,” where they’d tell the patient to go home and get her affairs in order. Now, with newer targeted treatments, outcomes are improving for most of us. I’m a beneficiary of that. It’s just the luck of the draw–nothing to do with me.

Over time, what I came to think of as Cancerland became populated with people I never would have met if I didn’t have cancer: The wise healer who runs the free support group in Boston for women with advanced cancer that I attended every week, bloggers and authors, my wonderfully loving and supportive care team, women who would have been good friends if we had met in some other way, people working to make life better for people like me, and people who died from their cancer. There are also the crusaders, most of them presumably sincere, who think cancer would be easy to cure if only a vast medical establishment were not acting to protect its profit margins, or who think “natural” methods of dealing with it are more likely to work than evidence-based medicine. So many new people, new ideas, new ways to see the world.

I refuse to say that having cancer has been good for me. But I have to admit I have grown. I am much more focused on being rather than doing. I am both more open and vulnerable, and more resilient. I am constantly asking myself, “Is this a good use of my time?,” and I change what I do, or how I think about what I’m doing, based on the answer to that question. I still have goals that I’m working toward, but I am spending much more time savoring the journey, with less anxiety about the destination.

I worry a whole lot less. This is my one, irreplaceable life. And no matter how hard I try to control the outcome I’m going to die, most likely sooner rather than later. So I’m accepting the things I can’t change as well as making changes that will help me find healing and wholeness. My wholeness does not depend on my physical condition. It comes, ultimately, from loving God and God’s Creation, especially the people in my life. It comes from loving what is.

Finally, I see myself as carrying on a kind of ministry to anyone who feels broken, or dead inside, or abandoned. I don’t hit anybody over the head with it. I’ve always thought the best kind of evangelism is a life well lived. When people find out I have stage IV cancer they often ask me how I “do it.” Then they might tell me what’s killing them, and I tell them what’s keeping me alive right now. Certainly the main thing is medicine. I go in every three weeks for infusions. I will be in treatment for the rest of my life. But the rest of it is choosing, as much as I can, in every moment of now, to be as fully alive and fully human as possible.

Edited 3/21/16.

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