Tuesday, September 22, 2009

Too Many Cooks

We are living our own version of Hell's Kitchen at my house this week. The problem is, as I see it, that Sue and I raised our girls to be strong, independent-thinking women. We also raised them to not be afraid to speak their mind. Now that Valerie turned 21, that's pretty much what we got two of -- strong, independent-thinking women who aren't afraid to speak their minds. Make that three if you count Sue. I'd also be a strong, independent-thinking woman if I were a woman, though, in my humble opinion, I'd be substantially more controlled about speaking my mind. Who'd've thought they'd turn those strengths against me, their great "tooter?"

Now if Sue were firing on all cylinders this would almost certainly not be an issue. But don't be fooled by the fact that she was discharged and is now at home; she's got a lot of recovering to do before she's firing on all cylinders. In fact we are all concerned about her mild state of confusion. What we are not in agreement about is what to do about it. (Note: We'll ask the local oncology doctor in a follow-up appointment tomorrow morning.)

The disagreements center principally around the administration of the multiple medications the various doctors have prescribed, and are exacerbated by our differences in communication styles. One of the daughters insists the meds be taken strictly according to the doctors' orders. Her take-charge approach has harkened me back to Al "I am in control here" Haig. The other daughter has inferred a sinister belief that my lack of strict adherence to the medication orders may be a subtle plan to off my wife, and/or that my failure to strictly document every medication administered by me may be a subtle plan to have my daughters off my wife by having them overmedicate her. The patient, herself, periodically wants to refuse some of the medications and insists on understanding the name and purpose of each medication -- four times a day.

During Sue's stay at the UCSF medical center, the nursing staff and doctors were fairly quick to acquiesce if the patient refused a medication. Such acquiescence is consistent with the UCSF Patients' Bill of Rights, and in particular the patient's right of "participation in decisions about treatment options, benefits, risks and alternatives including appropriate pain management." The UCSF patients' rights document states: "We respect the rights of each patient. We are aware that each patient has unique and diverse health care needs. We encourage a partnership between you and your health care team. And we encourage you or your designated representative to participate in discussions and decisions about your care, options, alternatives, risks and benefits."

Note here that "designated representative" in the last sentence above is in the singular, and the right of participation is offered to "you or your designated representative." Imagine the fiasco if our "team" tried to participate with the health care team at the hospital (or locally) in discussions and decisions about Sue's care. I am pretty sure that "designated representative" refers to the patient's designated agent for making health care decisions in the event the patient is incapable of making her own decisions. In Sue's case, that would be me. But it points out one of the important reasons for making a thoughtful Advanced Health Care Directive (Power of Attorney for Health Care Decisions) before undergoing significant medical procedures. Well, really, you should make one in any case -- just in case. Who knows when you, or your well-meaning "too many cooks" team might need it?

I leave you with these questions: 1. Are doctors gods whose pronouncements are universally what is best for the patient? 2. Are pharmacological solutions always (or only) the best way to heal? 3. Who should be in charge of making medical decisions if the patient is lacking mental competence? 4. In the continuum between total pain and total incoherence (and assuming the pain medication is the cause or a significant cause of the incoherence), what is the most appropriate level of pain medication?

[Postscript to my several pre SCT blog readers: You will not be out of the woods when you get discharged from the hospital, and you will not be back to normal. Sue pressed for and received an early discharge, but irrespective of when you are discharged you will need a lot of support at home. This will be particularly true if you develop mental confusion or cognitive lapses, which I am learning are fairly common post SCT -- and which are compounded by the medications which will be prescribed for you. In any event, you will need assistance with administration of your daily needs, including medications, food preparation, shopping, cleaning, transportation to follow-up medical appointments etc. Oh, and be sure to prepare an Advanced Health Care Directive.]


  1. I read the Sue/Jessica blog after Mark said, "I think Jessy may have more to relate to you on than before Sue got sick."

    Being the caretaker of one's mom is very hard. One on the biggest problems I had was with mom's meds. If she didn't take them in the night, then she was loopy in the a.m. The morning became a tug of war over pills. Most often, she did not remember taking or not taking her evening pills. It got so bad that I became the pill warden. I stood over her to watch her take her pills both a.m. and p.m. Much time and worry went into the process. Her dementia and depression made the whole process so much work.

    I find no easy solution for your family. As my brother, you see the care taking differently than I. I handle thing in a more controlled environment (schedules, time lines, pill count, pill boxes and dr. appointments pre-scheduled and attended my me or Grace for full followthrough). You handle things as they come and try not to worry about time, schedules, prescription recommendations.

    I would recommend that if the girls are taking care of Sue that you follow their schedule. If you are the caretaker, you set your own schedule, or not. It does not work when you are the decision maker, but not the task completer, when caring for another person.

    These times will be a good experience for you to decide which girl will be made responsible for your care decisions as you age.

    We have no easy answers. I find it interesting that you are in a similar spot to what I was in. It is interesting to observe how you are handling it.

    I wish the best for all of you. Don't let the differences divide you. It is easy to let these differences cloud the overall judgement of all involved. It is not going to be an easy time. The girls fear that if all is not done correctly, it may reflect on them as well as damage Sue. As women, we take our care taking roles very personally. We want to succeed at this. To do so, we sometimes become overly protective. Walk gently they really care.

    Much love to all.

    Dorris and Family

  2. I find this HILARIOUS "These times will be a good experience for you to decide which girl will be made responsible for your care decisions as you age. " hahahahahaha

  3. George, my heart has been very heavy for you and the girls this week. I know you have good intentions and you did a great job taking care of her in UCSF. Sue is so lucky to have you. I also know that Jessie is very emotional. I can totally relate with her because I too can be very sensitive.

    The most important thing right now is that everyone is working together. I, as you know, worked in the hospital with patients for years. Many times they or their parents would tell me of some ridiculous thing another nurse said or did. I rarely believed them if I knew it was out of character. Peoples perspective gets all distorted when they are tired, stressed, sick and /or on medications. We have to all have a united front on what is best for Sue. We all love her so much and we are all scared and hurting with her. Let us try not to hurt each other in the process of helping her. I understand that the girls are probably a little regimented on writing things down and making sure everything is done right. However, that is a blessing.

    You don't always know the result of missing meds. I have seen it first had and it can be very ugly. I know about the bill of rights and totally agree with them, when the patient is in there right mind, but Sue is not.

    My dad and I had a hard time getting along when my mom was in the hospital, to the point where I didn't want to visit. I would hate for that to happen to you. Let your girls know how wonderful they are. That will mean the world to them. Especially Jessie. Us sensitive types need lots of strokes. We don't always have to understand each other, but we do need to love each other.

    The needler.