Dangerous loopholes in "aid in dying" laws

[Dave K]

I don't need a doctor to provide me any details. . . . My decision is to live as long as I can. But, it is my decision and should not be the decision of anyone else. . . . I spent 30 years as an executive in the high tech industry. Mike's comment that micro reporting leads to micro management rings very true to me.

Thanks for chiming in on this, Steve. (I have a step-brother in Denver named Steve Walker. Any relation?)

I think everyone is on your side, here. Just to be clear, "aid in dying" laws are not about patient's choices, they are about doctors' choices. There has never been a law against taking one's own life in this country, and any such law would be ridiculous. But some states have laws against helping or encouraging others to commit suicide. "Aid in dying" laws are designed to give doctors the choice of giving you information about different ways that you could go about ending your own life, with the idea being that a person may be less likely to botch a suicide if a physician is providing advice and chemicals. I suspect most ALS patients at some point consider hastening their deaths and therefore want to be able to get this kind of advice without the government tying their doctors' hands. However, everyone agrees that this advice would not be professional if it didn't include full information about the patient's prognosis (i.e., what are the chances a natural death will be peaceful or painful?) and the availability of alternatives such as palliative and hospice care.

I also work in the tech industry and frequently deal with engineering standards and specifications for safety critical systems. When standards aren't met, or if they are inadequate, you risk outcomes like the Challenger shuttle disaster, or air bag modules that fire shrapnel into drivers' throats. If the tech industry created a system that is intended to facilitate someone's death, I would expect the highest level of engineering, quality assurance, and information standards to apply to prevent any foreseeable misuse.

You and my wife are fortunate PALS: you don't want help, and my wife has all the help she needs. But what about the many PALS who do need help? Here are some comments from ALS families from around the country about the unnecessary suffering they are forced to endure when they do not receive the basic home health care they believed their health plans would provide, and how being so overwhelmed impedes their ability to advocate for themselves. You can see from these comments the kind of duress that many PALS are under due to the current prevalence of substandard home health and hospice care for this group:

"My husband passed away from ALS last February. He had Medicare but it didn't provide any care in home. I had to take care of him on a trache for 8 months as he was unable to breath on his own or move anything except for his eyes. It was so hard on my own, no showers, sleep or eating for me for days, only if a volunteer would sit with him once a week. I couldn't take care of myself much less him from the sleep deprivation and not eating. I got a back injury from moving and changing him that made it nearly impossible to move, I now have to have physical therapy. I should have been there spending quality time with the love of my life. We missed so much time together that I can't stop grieving and the depression. Sometimes I can't bear the guilt and have thought of suicide, even though I did everything humanly possible. He decided to come off of the trache because he couldn't bear to see me so sad and I feel like it was my fault. I am in therapy and slowly healing. I feel for everyone going through this, patients and especially caregivers that have to watch the ones they love slowly wither away"
Lori Alford - South Carolina

"My dad has als and cannot use his arms or legs. My mom is now disabled after caring for him for two years. My sisters and I are now their full time caregivers and we are slowly dying trying to keep up with our parents needs and work and home life including kids of our own. Where is our home health help? Dad retired with 30 years service at two jobs twice! He has Medicare and a part b and d insurance. No home health. We were referred to Hospice but they only provide a nurses aide for bathing for 30 minutes a day and a nurse who checks on him once a week. They are great but the other 23.5 hours are all on us. My neighbor is in her 40's has Medicaid and has a full time home healthcare provider. Something has to be done. Wouldn't it be cheaper to help these folks stay in their homes as long as possible? Help!"
- Lisa Long, North Carolina

“My husband passed away in 2012 from ALS. I was his only caregiver. The physical, emotional and financial toll was enough to break even the toughest soul. We had to navigate care issues blindly. If not for the internet, we would have been completely lost regarding the ins and outs of Medicare policy.”
Cindy Jimerson – Georgia

“Can't imagine how ALS people survive trying to keep their loved one home! And they are not the aged and Alzheimer's/dementia elders, but in the prime of their lives. ALL caregivers need help, but ALS people have to be able to be at home! In this country, we care little for our aged, veterans, and sick--forcing them to be institutionalized - and even that often leads to financial ruin,!as well as taking a huge toll on family and parient. It is absolutely demoralizing!”
France Desrosiers – Georgia

“My husband has A.L.S. We don't have family near by and no close friends to help. I can't take him down stairs and into car. His wheel chair is not safe. I cannot control it. C N A takes us to Dr. Not time too buy food. and things we need...we are 78 years old. I am sure there are others with more needs than us. We have water, thick it, Boost, all large heavy things sent from Amazon. I can't get it into house... If you can't help us, please help others!”
Myrna Masterson – Connecticut

“My husband, age 43, has ALS and is on invasive mechanical ventilation. He requires care 24/7. I'm his caregiver and therefore unable to work. He needs assistant with every aspect of life. As each day of his short remaining life passes, he is faced with the difficult decision to continue his life or financially ruin his family.”
Leslee Bublitz – North Dakota

“To place my father in a care facility would have meant a 90 minute drive from his and my home. With the addition of his vent he required 24hr care by a "trained" professional or family member. One family member was my happily eager 6 year old that would put papi's vent hose back in place if needed while at the dinner table. The denial is real for most diagnosed with ALS so they don't reach out and advocate for themselves and the hope given by medical professionals can often be deflating.”
Mark Rushton – New York

“My husband has ALS, I am his caregiver, He requires care 24/7 as he has lost use of limbs, and now ability to swallow is becoming an issue. As the care giver I bath, dress, and feed him. It consumes my day and up two or three times at night. Before ALS he worked for years paying into this system that now claims we don't qualify for home care aid until he's at end of life. It's just is not right.”
Joyce Kite – Washington

“My husband Bobby Forster is a 26 year old living with ALS. We are too young to have any type of savings because we are still paying off college loans. All the money I currently make for our two person household goes to rent, utitilties, food, and Bob's care. I am working 40 hours a week and commuting 2 hours each day. When I arrive home I then take over as his care giver for the night. Essentially I am working 24/7. Increasing our access to home care will allow us to spend time as a newly wed couple instead of a nurse/patient capacity. He has precious little time left with me and I wish for that time to be able to be spent with us living our life as a couple to the fullest.”
Casey Stotz – Rhode Island

“My husband passed away after a 5 year battle with ALS. We were never told we could receive services through Medicare. The cost of his care was enormous and we paid for all of it out of pocket.”
Michele Salvini – Kansas

“I have ALS and it's costing a fortune for home health care. Either money will run out or I will. Who knows which will be first?”
Ruth Hinsdale – North Carolina

“My dad needs 24/7 assistance. My mom cannot lift any weight due to her own health problems. And they were approved for minimal home health care and pay out of pocket for a companion who they had to train who can only come one day a week for 3 hours. They are way under supported! And Medicare is nearly impossible to deal with.”
Karla Cavalier – Florida

“My mother has ALS (diagnosed 5 years ago). She is on a ventilator, completely immobile, and uses an eye gazer to speak. I am with her 24/7 as her only caregiver. We are in desperate need of help.”
Lauren Burch – Georgia

“My mother has ALS and my family is deteriorating because of caring for her.”
Laura Hillebrand – Missouri

“When I needed help, with my mother, there was none available......she had no insurance and I was told that they were not a charity help assoc......they were like a nursing agency that required helpers to be paid......Here I was the divorced mother of three working, as a nurse, two jobs, nights and could get no help for my mother........she died after six months of living with me....she was sixty years old.”
Carol Sellers – Tennessee

“My mother is struggling at home with me. We are begging for more support and answers and going in circles being told she needs a qualifying event to get more care.”
Alanna Murch – New Hampshire

“I am paying for my mother's home care with no help. I will be out of money in less then a year and am overwhelmed with what my options to care for her will be.”
Colleen Hammond – New Jersey

“My husband has limb onset ALS and no longer has use of his arms and is no longer able to work, I have worked full-time for over 40 years and continue to work full-time to try to keep our family together. I also am the caregiver of my husband who requires bathing, feeding, dressing, etc. My years of work dedication has provided for those who do not work and now I/we are in a position of much needed help and there isn't any...there is something terribly wrong with this picture and I don't know how we are expected to manage this. EVERY SINGLE DAY that I go to work, I have to worry about how my husband will be fed (as trying to keep weight on someone with ALS is extremely important), in addition to other necessities throughout the day. I challenge any one of you to stick your hands in your pockets for just one day...don't pull them out...don't have someone there to help you...and go about your day...then can you honestly tell me and those suffering with this dreaded disease that home care is not needed?”
Sharon Hare – Michigan

 

[affected]

May I ask for the reference as to where those quotes came from?

 

[Dave K]

May I ask for the reference as to where those quotes came from?

These are statements by people who have signed an on-line petition asking the ALS Association to make home health care an advocacy priority. I encourage everyone to sign this petition. Here is the link: https://www.change.org/p/tell-als-association-improve-home-care-for-als-patients

So far, ALSA has been very reluctant and slow to act on this petition. One way to give this petition impetus would be to make sure state lawmakers are aware of this problem when they are considering "aid in dying" laws. Lawmakers need to be made aware that, for ALS, there is a strong connection between inadequate home health care and requests for "aid in dying" drugs. This is a public health tragedy.

 

[swalker]

Thanks for chiming in on this, Steve. (I have a step-brother in Denver named Steve Walker. Any relation?)

I have a surprisingly common combination of first and last name. It has led to quite a few humorous incidents in my life along with a few headaches (such as a debt collector hounding me to pay the debts of someone else with my name).

I don't know that I am related to anyone in Denver with my name, though.

Steve

 

[Atsugi]

I read all those statements in Dave K’s post. Hard to know what to say. I feel like Schindler at the end, when he sees the crowd of all the people he saved, then he feels tremendous GUILT and breaks down in tears saying, "I should have saved more!" In fact, I'm crying now, just reading that post.



Our nation spent trillions killing 100,000 people in our recent and totally unneeded war. We have spent trillions on weapons in recent years. We bought over 70,000 nuclear warheads during the Cold War. Today we maintain a stockpile of about 7,000 nuclear weapons. We keep hundreds of aircraft, ships, missile silos and submarines ready for nuclear war around the world, around the clock.


Clearly we have the money; our lawmakers simply cannot bring themselves to prioritize the suffering of thousands of ALS patients. Every member of congress should be crying and saying, “I should have done more for them.”

 

[Dave K]

May I ask for the reference as to where those quotes came from?

I'm not ignoring you. I did respond with the URL but got a message saying my response was in "moderation." I'm away from my computer now but will re-post the link if the message never makes it out of "moderation."

 

[Dave K]

Every member of congress should be crying and saying, “I should have done more for them.”

Actually, the US Congress and state legislatures have already enacted laws that require this care to be provided. The Medicare hospice final rule requires as much home care as is medically necessary, and the federal HMO act requires federally qualified HMOs to provide home health care without limits. The problem is PALS don't have lawyers to challenge the managed care companies that are violating these laws. The solution isn't passing new laws--it's enforcing existing laws. One way to help this happen is for PALS and CALS to do what I suggested in my initial post above: insist that "aid in dying" physician checklists require full information about the patient's hospice rights. You should then see people waking up to how badly PALS are being short-changed of the home health care to which they are lawfully entitled.

 

[scaredwifetx]

Wow...a great thread! So many different opinions and I don't disagree with any of them. It's clear that quality of life is a very personal choice.

I do agree with Dave that all PALS and CALS should have a choice to have more hours of in home care. Yes...we would all love to be able to care 24 hours for our PALS but reality is that everyone is not able to do this. Be it financially, because of children and or just because we are all not cut out with the same cookie cutter.

Patients and their families should have someone on their medical team who can inform them of their choices and to fight to make sure that proper and personal care needs are given. To me, that seems pivotal to quality of life. It's all about the PALS right to choose and to determine what he/she believes is quality of life and be given the support of the medical team, legal field and their families.

The right to die with dignity should always be a choice when it comes down to a fatal disease. The law nor anyone's personal beliefs... will be able to change the end result.

 

[Dave K]

Patients and their families should have someone on their medical team who can inform them of their choices

The only laws I'm aware of that require this are . . . [drum roll] . . . "aid in dying" laws. That is exactly why I am encouraging all PALS and CALS to raise these issues in connection with these new laws. It is a golden opportunity for our voice to be heard to improve the level of information PALS are given about their choices.

 

[lgelb]

Dave, there is a federal requirement, available on line, relative to hospice sign-on disclosures. It's not all you would want but it does exist, explaining palliation and what-not.

Millions dying of other causes could use more hours of care to lift family burden. It's not just ALS. How high do you want your taxes to go?

In ALS, cancer, heart failure, respiratory insufficiency, so many fatal conditions, it is just a cold fact that if you're not your own best researcher and advocate, it's unlikely anyone else will be. I'm sorry if this is inadequate, but it is true and why a lot of people come here, so they can better fulfill that role or at worst vent a little while doing so.

Anyway, this is not change.org so please don't paste any more large snippets that are a lot to scroll through. You have provided the link and P/CALS can visit if they choose, to see more.

 

[Dave K]

You have provided the link and P/CALS can visit if they choose, to see more.

I don't see that the link was posted. Another member asked me to provide the source of the quotes, but when I responded, the reply was intercepted and never appeared.

As for the rest of what you said, you're entitled to your opinion. For myself, I advocate for PALS and CALS, and this is certainly an appropriate forum for that.

 

[Nikki J]

The link went to mod. All links do. I think it is visible in post 18? And this is post 27? It is hard for mods to know sometimes if things are visible to all because we see things in mod on a thread as if they were there. I do not see it in mod though?

 

[Dave K]

How high do you want your taxes to go?

Let's do the math. By enforcing existing laws, Kaiser was ordered to provide my PALS with 16 hours of daily in-home nursing and twice-daily three hour visits by home health aides. Not one penny of this is paid for with taxpayer dollars. Kaiser profits jumped nearly 15 percent last year, to $3.1 billion. At the same time, Kaiser dumps virtually all of its ventilator quads, forcing them into Medicaid, which in turn pays Kaiser over $900 per day to keep these patients in nursing home subacute units. I'm going to take a guess that you don't have a degree in economics.

if you're not your own best researcher and advocate, it's unlikely anyone else will be.

That is unnecessarily discouraging. I advocate for other PALS and know others who do, too. Are you with us or against us?
.

 

[scaredwifetx]

Mike, I ran out of Thank You opportunities last night. I so totally agree. We have spent trillions fighting wars that I feel aren't solving anything. They are just killing. It would be great if just a portion of that money was put into the actual suffering and care of the actual Americans who need it. Laws can be introduced to change our care but in reality how many will be able to pay attorneys to get the help they deserve.

 

[affected]

Thanks for posting the link. A real issue with things going to mod and then taking time to be approved is that they drop into the thread on their original time stamp instead of the approved time stamp. This means they drop in way back in the list of posts so often then get missed.

I appreciate you have been very open on this thread and have the right to say your piece. It's interesting how heated the replies can become! It's a very important topic and I'm glad you have opened it as many are giving this a lot of thought as a result.