And the cancer patient learning process continues

About 10 days ago, with the agreement of my doctors here in town and the begrudging acceptance of my NYC oncologist, I decided that I am no longer strong enough for chemo and have chosen best supportive care, pain management and to begin interviews with hospice. The learning experience that has followed making that decision has, I confess, thrown me for a loop.

There are some – friends, family, other patients – who have asked me if it’s too soon, if I was just feeling depressed at my slow recovery from the blocked kidney and nephrostomy tube placement. Now, 10 days after making the decision, I can say maybe. But I do know that my decision to stop chemo was the right one, and as Dr. Personality so directly pointed out, as soon as I stop chemo, the tumors will grow and my pain will increase. I know that without the kidney issues, I might have several months left – but kidney blockages added to the mix are game-changers that mean I’m at much higher risk and could deteriorate much faster with less notice.

What I wasn’t prepared for at this point in my dance with cancer is to get the impression from the hospice facility I’d very carefully researched that I’m not quite sick enough. Why? Because I don’t fit their patient profile of someone who is within days or hours of end-of-life.

Although this is a well-respected, carefully chosen local facility, they apparently prefer to concentrate on patients who are in immediate danger of dying, rather than patients who know they are out of options and want to live out their days surrounded by responsible health care and professional caregivers.

If I wanted to die in my living room and had family and friends to take care of me 24/7, I’d have fit their more popular model of caregiving. But if I want 24/7 care provided by a facility, and I’m not due to die within a couple of days, it looks like I will have to consider extended care, nursing home type facilities. Not what I wanted. Not what I planned for. It doesn’t matter that I have good insurance and private money.

But apparently, depending on the services provided by hospice groups in your location, dying with dignity isn’t about what you prefer as much as it is about what hospice prefers to provide.

And the learning experience continues.

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22 comments

  1. Amanda says:

    My heart goes out to Pat, her family, and pets. Thank you for sharing your story of such a strong, brave women with a beautiful attitude about life. Thank you Pat!

  2. Jeanne says:

    Pat, I respect your decision. I agree that we know when it’s time. I’m so sorry you’re having to manage all these details when it’d be so great to just rest, and relax. My thoughts are with you. My prayers for freedom from pain, and inner peace go to you. It’s time for others to be strong, and you can let go.
    With compassion and admiration,
    Jeanne A (from CCA)

  3. Kimi says:

    Pat I’ve always respected you in each and every stage of your journey. I agree, you do knowwhen it’s “time”. I may be approaching that myself, soon, and have already have a discussion with my own doctor about pain management. You’re right, not everyone wants to die at home, and I myself have always been determined to die sans chemo. Wishing you the best, and whem Gaelen finally falls silent online, I will light a candle in your honor. Kimi

  4. Megan O'Donnell says:

    Pat, I have followed your journey via your blog as well as from My CRC Connections from the time my mom was diagnosed in 2009. I recall your name on several discussion boards that helped my mom and the rest of our family get through her diagnosis and treatment.

    I’m very saddened to read this post and can’t help but think there must be SOMETHING that can be figured out that would make you the most happy and comfortable. I’m not very familiar with your location as I’m from the Midwest, but do have family in NY. Have you heard of or looked into Francis House in Syracuse? or Villa Marie Claire, Hospice and Palliative Services– they are a bit further from your location I think, but thought it was worth throwing out there. Or Meadowbrook Care Center in Freeport, NY?

    I’m not sure if that is helpful at all but I thought I would at least forward these names onto you in hopes that they will help.

    Wishing you the very best in hopes that you can find exactly what you’re looking for, I have confidence that you will find a solution that will work.

    Sending lots of love and positive thoughts your way.

    Megan

  5. Mary Miller says:

    Pat, you sure have folks all over the country wanting to support you…To echo Diane Schull’s comment, my husband’s dad in Spokane, WA got a special hospital room designated for and staffed by VNA hospice until a hospice ctr. bed opened up. Would be glad to make phone calls if that would help. (email me). Thinking hard for other options…Btw, I’m just this week writing a FightCRC article about making this decision. If you want to talk, I can call you.
    But mostly, please know so many of us WANT to support you however we can. You’ve given so much to so many.

  6. Susan Ewing says:

    Pat, I can’t seem to find your email address (I used to have it).
    Do any major cancer treatment centers have anything to offer? Cancer Centers of America? Roswell? I don’t know where else, but maybe they have recommendations?
    I was so sure you were going to beat this…
    Su

    • PAS says:

      Su, I’m out of options – and far too tired at this point for anything that will make me weaker. When it’s time, you know…and it’s time. I was never one who wanted to die with chemo in my veins, chasing treatment miracles. I had a good run, far better than anyone thought I’d ever have – but there are no more treatments left.

  7. Deborah Kanter says:

    Pat,
    I read your comments with awe at your decision and rationality, emotion at the progression toward the inevitable (for all of us, actually)and hope that you will be able to more easily find a hospice situation that matches your wishes/needs.

    My situation, when it is time, will be parallel to yours, except for the lack of funds. You are teaching me much and you are a good writer.

  8. Diana F. Scholl says:

    I have worked with hospice over many years and find this experience absolutely appalling. I will do some research to see if it is common but I find that hard to believe. I live in VT and we only have 1 residential hospice. I know they require the 6 month diagnosis from the doctor in order to receive the hospice benefit, but I also know that that time frame can be extended if necessary and often is. They told me once that a guy came who stayed 2 years! For one thing, we know that patients often live a few months LONGER on hospice than they do if they don’t have that support.

    The only thing I can think is that they have too high a demand to allow the bed to be used for an unknown length of time. That is still unconscionable. Most hospices (admittedly, home based one) always bemoan the fact that people come to them so late in the progress of their disease. They should have praised you for making such a good (though horribly difficult) decision when you did. Not punish you by saying “you can’t come here.”

    If you would like to contact me, I’d be glad to do some research on facilities near you (PA, I think Nancy said?) Meanwhile you will be in my prayers that you get the support you need to live your life, however long, to its fullest.

    Diana Scholl, UCC minister and hospital chaplain
    Middlebury, VT

    • PAS says:

      Diane, I’m in central NY. Unfortunately, the facility I’d researched and chosen is the only one of its kind, providing exclusively residential hospice care. They also require the doctor’s prognosis of 6 months or less to live…but at some point, they began catering to the guilty families who’d ignored hospice for months but at the very end really didn’t want mama/papa to die in the hospital. They turned their business model to focus on last-minute EOL referrals, rather than on patients who earlier in the game realized that they were out of treatment options and could deteriorate at any point in time, and wanted to be in a safe place.

      The reality is that they can earn more from turning that bed 6-8 times in a month (average stay is days, often less than a week, sometimes even only hours). They earn only partial monthly fees – but make up for it with the volume of grateful donations from guilty friends and family of each patient. The lay intake person actually told me, when I said I was trying to avoid the emergency hospital admission, that being admitted from the hospital was better for them, since Hospice of CNY would do a direct admit if they had a bed. I pointed out that if they didn’t have a bed, though, then the emergency hospital admission would suck for me. That didn’t seem to make an impression. :(

      Yes, they are still providing a “service” of sorts – but I agree with you that it’s a corruption of what hospice is intended to be. I am not going to live indefinitely. If my one working kidney fails, I’m done. Without additional chemo, which could shut down that one working kidney, the tumor pain will reach levels where I’ll need higher doses of pain meds…and it’s not safe for me to live alone and take those doses (I’ve already had some scary moments.) I don’t want to be in the position of employing nurses 24/7 in my home – needed their care and at the same time needing to be their boss. I want to be surrounded by professionals I can trust. And I’d rather not die in a nursing home or hospital. Unfortunately, that option isn’t really available in my area – even though we have a facility that is happily selling that dream.

      I appreciate your offer of help, but I think this is something I have to deal with myself.

      • Diana F. Scholl says:

        Wow, Pat. I am just horrified by what you are having to deal with. And, by the way, I am totally in agreement with you. So many people who think they want to “die at home” have not really thought through it. I have no desire to do so (though I must admit I plan to have a dog beside me and hand in fur when I take my last breath….if I have a choice!) I too prefer to have my family/friends as support, not as caregivers. Since I too live alone there is no “personal caregiver” anyway. Well, one of my corgis would love to take over that role. I doubt she would qualify!

        To me they have made an odd economic argument for their reasons for short stays. I have been at statewide hospice meetings here in VT (as in just last year) where it was actually the opposite in terms of the hospice making money. They said their highest costs are in those first few days as the patient is evaluated and services are set up. (This is in the home setting; maybe some of the start-up costs are less in a residential facility.) Where they make their money is in the longer term–the costs are reasonably low over time because they are doing comfort/palliative measures only. But they are certainly accurate if volume is their goal to maximize revenue, and if they are the only game in town I guess they don’t have the pressure to change that goal from money to patients.

        They do have a point about the direct admit from the ER. For one thing, once you’re admitted to the hospice, I doubt they would throw you out because you didn’t cooperate and lived longer than their hours/days/weeks. Your point about bed availability is true. If there was no bed, the ER would likely admit you to the hospital and then their discharge people would have to figure it out. Best case: the bed opens up at the hospice before the hospital needs to have you move on. Worst case: you have to go to a long-term care bed until the hospice bed opens and then you move. All the moving around is horrible and could be by-passed if they would just listen to you and do the right thing! (This is all from my decade+ experience in a hospital setting; could be differences there for sure.)

        Oh, one other thought. Perhaps someone could look at hospices as far as you’re willing to go from your hometown and see if there could be a hospice room in a hospital or nursing home available. We have one room here in Middlebury and it’s just being expanded to 2 rooms because there is so much need. Totally separate from other residents; fully served by the hospice team plus the facility’s own workers. Still requires the 6 month federal prognosis but nothing else that I know of. Nicely designed to be a “home like” setting. It’s possible. Uneven quality and quantity of hospice/palliative care services is certainly an issue nationwide. That’s why I’ve been active in healthcare reform for many years; something has to change.

        If you want to come to Vermont, we’ll be good to you! But meanwhile take good care of yourself each and every day. Sounds like you have some mighty fine friends right here!

        Diana

  9. Pat, what’s available for home hospice care in your area? It’s not the same as being in a facility, but home hospices services here where I live (and I work as a PT in homecare, by the way), can provide quite a lot of help, pain management, adaptive equipment, respite assistance, etc., as well as to help you navigate the system in general. Plus, they are allowed to start with palliative care, long before end of life is imminent.

    It shouldn’t be this hard, though, for folks to get what they need. But ultimately, it’s the individual who has the right to steer her own ship. Good luck. Keeping a good thought for you.

    Kathi

    • PAS says:

      Oddly enough, Kathi, although I’m being pushed (hard) toward in-home hospice care, I don’t have anyone who can provide 24/7 care, so the local hospice group won’t open a case file until I do. And I’ve been advised that IF I go that route, I have to be prepared to follow it to the end, because I’ll be taken out of the pool for consideration for a hospice facility.
      I decided years ago that I didn’t want to die in my living room, surrounded by my family. That is not my ideal death. For one thing, most people in my family are not natural or even accidental caregivers. For another, I don’t want family tensions ruling my last days. Call me crazy, but I want to be surrounded by health-care professionals with 24/7 access to good drugs who aren’t going to be judgmental about my need for them…and I want to be able to send family home when they get too dysfunctional. ;)
      I also don’t want to have to be in the position of being the employer of 24/7 nursing care on whom I’m dependent but for whom I’m also the boss. I want a facility (hospice) to take care of that. I have bone mets, and anticipate being on some heavy duty drugs during which I’m not going to be very functional. If the choice is pain control through drugs, or the ability to function as a boss of the 24/7 care that I’m paying for, I want to be able to choose pain control and going to sleep with a clear heart.
      Not everyone wants to die at home.

  10. Nan Delphia says:

    Then the news articles that “patients wait too long for hospice” are a joke. I would want exactly what you have chosen. My family can’t handle a wet paper bag ripping. I don’t want to be at their mercy. And no, my family won’t rise to the occasion.

    Swing chickens and offering up vibes something turns up that is compatible with what you would like.

    Nan
    Troy, Mi

    • PAS says:

      Actually, I think most patients (and families) DO wait too long to call in hospice.
      And that can’t be helped by hospice not having consistent offerings across the country.
      The issue that’s troubling to me is the variety and inconsistency of hospice services (or lack thereof) across the country. In many places, there ARE no options for residential hospice. Your choices are to die at home, surrounded by family who may not rise to the occasion, or die in a hospital, which may not be the environment you wanted.
      Neither works for me, and that’s the spot I’m in right now.

  11. I’m sorry. Hospice care should be trying to fit the patient’s needs, not the other way around.

  12. Mighty Casey says:

    I’m beyond sorry that it took a FB post from Jody Schoger to introduce you to me. I’m also beyond sorry that the dinks at your carefully-chosen hospice facility have such a narrow definition of “sick enuf”. Dignity that isn’t defined by the patient is not dignity at all. Big hug across the net. I’ll hope for a consciousness-raise on their part …

  13. Sorry this is so difficult! It doesn’t seem right that decisions like this are so complicated. I went through the hospice thing with my grandmother – deteriorating rapidly, into hospice, stabilized with hospice care, kicked out (in a kindly sort of way because she didn’t die in a few days, into long term facility where she died a month later. It’s crazy that getting good & appropriate care is such a nightmare in this country! I hope you & your docs can get them to reconsider.

  14. Odette Fetzner says:

    You are so good at wearing your “game face” it’s hard for them to believe how sick you are. Talking to them face to face your strength comes through. Can’t your doctor advocate for you?

  15. azahar says:

    This seriously sucks. Any other hospice options near you?

    Btw, still available for that skype call anytime you like.