No announcement yet.

Rights of SCI Individuals?

  • Filter
  • Time
  • Show
Clear All
new posts

    Rights of SCI Individuals?

    Sorry to bother everyone with this long message - but I would appreciate any advice and sharing.

    Questions: How can my Dad be protected and get good rehab? Who can decide the goal of care? How can I get help to give my Dad a voice?

    1.0. My Dad is C3-C4, incomplete, on a vent. In the ICU, doctors encourage (and even “bully”) to get my Dad to choose to self-euthanize. There is constant reference to age -- he is over 70 and given 6-18 months to live.

    2.0. Transfer to Facility 1 - a few examples of a bad experience:

    2.1. My Dad is often left without covers. He becomes hypothermic. My Dad constantly complains of breathing difficulties, but the doctors and RTs repeatedly say that there's nothing wrong. My Dad contracts pneumonia which goes undetected for 7-9 days.

    Note 1: Every patient with high-level SCI has access to a cough assist – but my Dad is not given access.

    Note 2: The nurses put a heating “pad” under my Dad to help the hypothermia. The temperature reading goes up over 100 degrees. My Dad is in pain but can’t talk; the nurses ignore him and they don’t know how to set the machine (which breaks down twice).

    2.2. At physical therapy sessions, therapists arrive late and leave early. I even timed a session at a mere 5 minutes (which supposed to have been a 30 minute session).

    2.3. Prior to entering Facility 1, my Dad could sit up for over 6 hours and be fully alert. But at Facility 1, it seems that he is given an excessive amount of drugs, is barely able to sit up for one hour, and is very lethargic. Facility 1 staff attribute his lethargy and difficulties to “age.”

    Note: I learned that he was given excessive drugs when his liver had problems. The doctor had suggested changing his status to DNR and I refused – so the doc had sighed and told me that they'll reduce the drugs. Much to my relief, my Dad's liver got better after this was done. But in retrospect, was it necessary to give him so many drugs?

    2.4. At Facility 1 – there is only a handful of days when my Dad isn't ill. He had four rounds of antibiotics, only two were necessary.

    2.5. My Dad gets pressure sores. Facility 1 didn’t inform us of the sores which were discovered by Facility 2.

    3.0. Transfer to Facility 2 – a few examples of a not-good stay:

    3.1. Facility 1 tells us that my Dad could continue to receive therapy at Facility 2. But after a few weeks, we are informed that my Dad is not eligible for additional therapy because his rehab hours were concluded at Facility 1. This is annoyingly sad, because my Dad was mainly left in bed at Facility 1. My Dad’s insurance rep doesn’t want to hear about what happened to my Dad and merely says that Facility 1 has a good reputation and that my Dad’s “not rehabable.”

    3.2. Initially, despite Doc's order to get my Dad out of bed every day, the nursing staff gets him out of bed only 3 times during a 5 week period. My Dad contracts pneumonia.

    Note: Other patients are regularly gotten out of bed.

    3.3. My Dad’s roommate (also C3) gets range of motion 3x per day – my Dad is ignored and doesn’t receive any range of motion.

    3.4. My Dad changes to DNR status – but when he requests that it be change back to "resuscitate," the doctor ignores his request.

    4.0. Discharge Home - a few examples of what happens when you get lousy rehab:

    4.1. My Dad does not have a wheelchair or lift -- there is no plan of putting in a ramp

    4.2. I must google (and ask CareCure) to find out how often we must change his trach - my Dad does not have a pulmonologist

    note: Facility’s 1 doctor tells me that my Dad can see a pulmonologist at Facility 2. Facility 2’s doctor and Home Health Agency 1 informs me that it’s unecessary -- yet, insurance requires a pulmonologist to sign orders.

    5.0. Bleak Goal of Care - Adult Protective Services.

    5.1. I discover that the Home Health Agency 1 has been given directions for a bleak “goal of care” of "maintenance mode," i.e., they will not try to improve my Dad’s condition and the direction is to let my Dad “come home until he’s ready to let go.”

    The claim is that I am interfering with the “goal of care” -- thus, I receive the threat of being reported to Adult Protective Services. I am instructed not to talk to my Dad about the diaphragm pacer, frog breathing, electro-stimulation, standing frame, power wheelchair, and others... even, any SCI research.

    5.2. Sadly, the majority of my family members are not supportive of my Dad -- I am his main advocate. I want to get a LAL mattress, good wheelchair, therapy, and others for my Dad, but my family members don’t want to spend my Dad’s money (he has a decent amount to afford better care) -- and I’m running out of funds since I'm not working in order to be his main caregiver.

    One sibling is well-networked in the healthcare industry and even threatens to call Adult Protective Services if I mention the cough assist.

    This sibling even tells the doctor that my Dad wants a DNR status (when he does not) in order to complete this pink DNR form. The doctor and sibling sign the form. I suspect that this sibling had helped to determine the bleak goal of care.

    This sibling has more than once brought in Palliative Care (they ask leading questions to help push the goal of comfort care and DNR) to meet with my Dad who is already bummed because he’s being treated like a mushroom (my Mom even threw out his voter’s ballot).

    One brief shining moment is that this temporarily stopped when Home Health Agency 2 (about 9 months after my Dad’s injury) had a case manager who, formerly with a top SCI rehab program, asked my Dad directly if he wanted to improve his condition -- my Dad answers in the affirmative. Sadly, they transfer the rep (who is the only person who has challenged my sibling) out of my Dad’s case, and more time is wasted with reps who support my sibling.

    My sibling has my Dad sign other forms but would not leave copies for him (though he requested this). He wants to rescrind or cancel what he signed.

    Another Question: It's been 16 months after his injury -- what is possible?

    If statistically, seniors have a 4-5 time higher chance of dying within the first year -- it seems to be a self-fulfilling prophecy.

    Amidst all his difficulties, my Dad still has his sense of humor.
    Last edited by Joey_SF; 8 Mar 2013, 10:12 AM.

    Seek legal help if it appears you are at odds with your family about the care of your dad. This seems to be something stacked against you. I would think your mother should have more power than your sibling unless dad transferred it.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.


      Time to get a lawyer IMO.



        Sounds like they want him to die fast to get his money....really sad....get a good lawyer advice on this imo.

        Sounds like you are the only one who loves your dad rather than his money.



          I regret having no useful advice, but I hope desperately that someone can offer a route to remedying this tragedy. I'm so sorry you and your dad are having to confront such cold intransigence. It's terrifying and heartbreaking to think about the people who don't an advocate like you by their side. I wish you all the best.


            If I were you I would try and find a medical ethics advocacy group or expert and present this to them and see if you can get them and the press to back you. You could also try some right to life and anti-euthanasia groups.

            Another interesting question comes to my mind...

            How in the world do you reconcile a DNR and vent dependency?

            My ex-wife was a hospice social worker and was brainwashed into thinking that everyone on the planet needed a DNR. She was an absolute nut about pushing DNRs (even outside of work).


              This really breaks my heart. I am so sorry.

              This is a legal question. Your family is not obeying his wishes because he is helpless and he is not able to advocate for himself. It is very sad. His money should be used for his care. Of course, the insurance company and their employees (including the HomeCare company they pay for....) have a disincentive to provide your father more care. And unfortunately your mom and sister seem happy to follow their "advice".

              They cannot threaten you with Social services.... Well, they can but these are empty threats. You could actually threaten THEM with calling Social services since they are not following your father's wants/needs for their own gain.

              I understand that family dysfunction is likely at play here, and there is no easy solution. Of course, if switching to Medicare would provide your father with more options, that is what should be done and who gives a crap if your Mom loses her dental insurance. Priorities are totally screwed up here.

              It is amazing that your father has made it this far with such poor support, poor doctor care, poor rehab. It is a testament to the good care and attention YOU have given him. But you should not have to make this huge sacrifice alone.

              I would try to contact the one case manager from the other home care company and talk with them.... even if it is just for feedback/input.

              I also found this California based organization very good for questions regarding coverage, legal/medical issues. They have helped me quite a bit.


              They know their stuff. Keep asking for a supervisor until you find someone who can help think through your situation and options. They should be able to review with you his coverage, Advantage vs. Medicare, your rights, your Dad's rights and perhaps the issue of abuse.
              Last edited by hlh; 2 Mar 2013, 2:37 PM.


                Joey, I'm so sorry. This is more than any family should have to handle.

                I can't speak to the advocacy or legal issues as they're different in the US, but for what it's worth on the breathing front, I'd highly recommend that your dad needs to be getting up as often as possible. Constant bed-rest is pretty much asking for pneumonia. One small tweak that made me feel as though I could breathe better was to increase the inspiration time on my vent settings, so that the inhalation feels deeper and less gaspy. Regular Ventolin treatments also help to keep those airways expanded.

                You're a great son. You both deserve so much better.


                  I'd suggest contacting an Independent Living Center or California ADAPT.


                    Thanks for the advice and support.

                    1. Durable Power of Attorney for Health. Recently, my Dad agreed to make me his durable power of attorney for health -- it was formerly with my Mom who still controls the assets.

                    However, my family doesn't know this yet -- I expect a major battle.

                    2. Medicare and Supplement. I just helped to switch my Dad to Medicare and a supplement program. If anybody needs info about this, please ask me - because no case manager or social worker could inform us about the "rules" and how to get the supplement and all the little "tricks."

                    I am hoping that this would help to free my Dad to access other doctors so that he is no longer locked into the HMO's providers and no longer requires a referral.

                    3. Adult Protective Services. I've been told that I have been TWICE reported to Adult Protective Services (ADS) listed - the cases was closed both times and no one spoke with me. The 2nd time (reported by the Social Worker who supported my sibling's accusations), I really wanted to talk to ADS to explain what was happening but the rep told me that it was closed and I had to reopen the case in order to speak with them.

                    Does anyone know about ADS and should I write them since this seems to be "on my record?"

                    4. Lawyer. I found a lawyer -- ouch, very expensive - minus more of my funds! He asked me what I wanted him to do.

                    Idea: How about a letter which stated my Dad's desire to improve his condition? Any suggestions?

                    My Dad has agreed to retain the lawyer to represent him but is worried about my Mom, who is a bit crazed and who listens to my sibling (who is a lawyer). My Dad only wants to use the lawyer as a last resort... but, I think that we're at the last-resort-stage because I'm having the most difficult time with the caregiving (I've learned a lot) and trying to find resources, while advocating for my Dad and warding off my siblings' attacks - I'm kinda upset (euphemism), exhausted, and want my Dad to have back-up protection just in case I completely fall apart. Sadly, my siblings seem to spend more time attacking and doing rotten stuff -- rather than to help my Dad.
                    Last edited by Joey_SF; 11 Mar 2013, 7:38 PM.



                      You have done an AMAZING job to get all of these things accomplished. Just fantastic.

                      What I would try to do now is switch back to the prior Home Care company that had the good case manager. Medicare gives you the flexibility to go wherever you want, if they will accept him. All you need is the order from the doctor. His PCP is sufficient. My only worry had been that his prior insurance may have covered more Home Care hours/duration.

                      Which brings on the next big step.... finding a physiatrist or rehab Neurologist who can start to advise you as the primary doc, and find the appropriate help and treatment plan you need.

                      Of course, if Santa Clara will now accept him on Medicare for a rehab "tune-up"... that is the best choice to do as soon as possible. They can start all the rest (actually doing some rehab, finding doctors, getting equipment, teaching you/your dad, finding home care, figuring out all resources your father is eligible for etc..). You will still need to be aggressive to ask for what you need, as even good rehab places are overworked/under staffed.

                      While you are doing these things, I would use the Lawyer initially for advice as to your rights and your father's rights. I agree that this is a very difficult situation and would love for you to avoid anymore family strife.

                      Again.... very well done. I can only imagine how hard this has been.