Legal issues

Legal Issues

It’s something we all should have ready, even without a terminal diagnosis, but once you have a terminal diagnosis, it is crucial to get some legal affairs in order so that loved ones aren’t left wondering what your wishes are. Here are a few recommendations.

Last Will and Testament. These are customizable and state- or province-specific. Be sure to contact an attorney if any property is involved. Mary did not own any property or have any asets, so she had not executed a will, which made it more challenging for me since we were not legally married. It was all the more crucial for us to have all the other documentation in place.

Fill out your Advance Directive aka Living Will: In the US, these are state-specific forms. They do not require an attorney, but must be filled out voluntarily, designate a proxy to make decisions on your behalf, and often require witnesses. You can download the forms here:
US http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
Canada http://eol.law.dal.ca/?page_id=231
This was the hardest form for Mary to fill out. She did not want to talk about end-of-life care. She did not want to think about how the disease would progress. She did not want to decide in advance about life-sustaining treatment. It took a month of long talks, tears, and the first arguments we EVER had in our relationship before she would complete them. From that moment on, I carried the original and copies on me at all times.

Be sure you have your Power of Attorney (POA) ready and that the person(s) you designate are aware of their role, and of your Advance Directive. This document must be voluntarily signed by the patient, while still “of sound mind” and must be notarized. A “triggered” Power of Attorney takes effect after a physician documents that the person can no longer make their own decision. Another type of Power of Attorney is usually granted by a court and is not voluntarily given by the person or is due to the person not being “of sound mind”. Depending on how the POA is filled out, in can include the ability to make medical decisions, legal decisions and financial decisions for the person. It is important to note that a Power of Attorney ends at death, so the designee must take care of legal/financial issues prior to the persons’ death. The forms can be found here.
US https://www.rocketlawyer.com/form/power-of-attorney.rl- Canadahttp://www.lawdepot.com/contracts/power-of-attorney-form/…
Mary had to have a cardiac ablation procedure in 2009. Because of what she had seen her father go through when he had open-heart surgery, she wanted a triggered POA in place prior to that procedure. Once she was diagnosed with ALS, I carried the original and copies on me at all times. And I did have to trigger it eventually. That was one of the hardest things I had to do – to prove to the doctors that she was no longer able to make the decisions regarding her care, and to take that away from her.

A “Five Wishes” document combines a Living Will with a Durable Power of Attorney for Health Care and is available in some states.
US – https://www.agingwithdignity.org/
We did not use this, so I am not as familiar with it.

A POLST is a Physician Orders for Life-Sustaining Treatment. If you call for help, emergency responders are REQUIRED to take ALL measures to sustain life unless you have Physician orders stating otherwise – even if you are on hospice. Advance Directives do not work in these situations. This is the document that can show emergency responders that you are a DNR and they then will not do CPR, but will respond to other medical needs. Other names for a POLST: MOLST, MOST, POST, TPOPP.
US http://www.polst.org/
Canada https://www.interiorhealth.ca/…/Medical-Orders-for-Scope-of…
This form was posted on our refrigerator in order to quickly provide it to emergency responders. I also carried copies of it on me.

Appointment of Person Authorized to Dispose of Remains. These are state-specific forms that allow a person to claim the remains of the deceased when they are not the legal next of kin. This form must be executed prior to a Power of Attorney being triggered. Again, the POA ends at death, and will not give that person the power to claim the remains and determine what happens with them. I have not been able to locate a central website that houses these, so you would have to search for your state or province, or consult an elder attorney. I was able to use my employer’s Employee Assistance Program to speak with a local attorney and get this form at no cost. When we executed this, Mary was not able to physically sign the document or speak out loud, so we filmed her agreeing to the document and designating a proxy to sign the form on her behalf. We made sure that her lips were visible in the video so that someone could read her lips to see she was giving consent.

These are just some suggestions. This is definitely not a comprehensive list. Please consult a local attorney for any specific concerns you have, and to be sure your documents will be recognized and will hold up in court if challenged.

By bansagart, ago

When you need to go to the hospital

I live in a small town – population 600. We have a fabulous volunteer fire department with volunteer paramedics who work closely with the local ambulance company. I know because while Mary was alive, they were frequent visitors at our home.

The closest hospital is 12 miles away. They know nothing of ALS; they didn’t even properly treat Mary’s bloody nose well before her diagnosis. Long story. Suffice it to say there is no way in hell she would go there (neither will the ambulance drivers). The next closest hospital is 19 miles away. We went there several times, when it was “unplanned/urgent”. The hospital next to the ALS Clinic is 29 miles away; that’s where we went for “planned” stays.

Some tips to share from my experiences:

1. Before an emergency: Contact your local Fire Department. Let them know someone at the address has ALS; educate them in advance if you need to.

2. Before an emergency: Contact the ambulance company. Have them flag your address with someone who has ALS, who may be unable to communicate, and what equipment they use.

3. ALWAYS go to the ER by ambulance. You do not want your pALS hanging out in the waiting area, exposed to who knows what, with a compromised ability to shake off even a cold. “Walk-ins” are automatically lower on the triage scale; if you come in via ambulance you will be in a treatment room immediately.

4. Arrange ahead of time with your ALS clinic; if your pALS can wait, have ambulance personnel take them to a larger hospital. Tell them it is “Physician Request”.

5. If your pALS uses a bipap/avaps/vent, send it on the ambulance with them. Have them plug it in to the ambulance outlet so they are actively using it when they arrive. It will make it harder for the ER personnel to think “oh they don’t need it, it’s just a cpap” if they are already on it. They may, for liability reasons, want to switch your pALS to the hospital’s equipment. That’s fine; they can get the settings right much more quickly with the home equipment there.

6. If there is any chance your pALS could be admitted, take your Cough Assist with you. Small town hospitals may not have one; larger hospitals may take days to track theirs down. Same goes for feeding tube supplies and formula.

7. Always have an updated medication list; while waiting for the ambulance, note the date, time and dosage of the last time they received each meds. Send it with them on the ambulance, along with a list of any allergies. Don’t trust that the hospital will have them on file just because you’ve sent them before. Take copies of these with YOU: POLST, Five Wishes, Living Will, Medical Power of Attorney, DNR, etc. I always had the originals and copies so the originals never left my hands.

8. If your pALS has trouble communicating, take any communication equipment with you to the hospital.

9. Don’t be afraid to challenge the ER personnel about what your pALS needs. Ask if they are familiar with ALS. Ask if they have a neurologist, pulmonologist, respiratory therapist available. Give them the numbers of your pALS’ doctors and suggest they call for a consult.

10. If you don’t get what you need, if you are being brushed off, ask to speak to the Patient Advocate or Quality Management team. Often this is enough to get them moving.

Call on your ALS Community – other CALS, widows, family members. Let them know what support you need. There are a lot of experienced folks around. But also remember every pALS is different, every pALS has a different medical history; what is right for one person is not the best choice for another. Trust your gut.

By bansagart, ago

Caregiving Crisis

As ALS progresses, more and more assistance is needed. First it’s to tie your shoes. Then it’s to brush your hair. Pull up your pants. Get dressed. Stand up. Transfer to a wheelchair. Go to the bathroom. Bathe. Eat. Assist with bodily functions.
Family caregivers are quickly overwhelmed, having to learn the complicated medical care needed and trying to balance their relationship with caregiving. Some people are fortunate to have family members and friends nearby to help with caregiving. We didn’t. We had moved to another state when I was offered a promotion, and the nearest family members and friends were literally 1000 miles away.

Fortunately, thanks to Medicaid and the State of Oregon, Mary was approved for a significant number of caregiving hours, starting with 40 hours a week (so that I could continue to work). Only three months later, six months after diagnosis, that was bumped to 15 hours a day, 7 days a week, because of how rapidly the ALS progressed. It often took two people to put her in bed or get her up in the morning, making sure that her breathing wasn’t compromised, that her fragile neck was supported, that she wasn’t injured and neither were we.

There is a nationwide severe lack of caregiving agencies willing to take on a patient with ALS. It is critical that the agency have “nurse delegation”, meaning that an RN has to be willing to train and put their license on the line so that a CNA or other caregiver can administer medication, clean the stoma for the feeding tube or trach, put formula in the feeding tube, know how to use the various medical equipment needed, from a bipap to a Trilogy to a Cough Assist.

When you add in living in a rural area (not even an hour from Portland), our options for caregiving agencies diminished to one. ONE agency willing to do nurse delegation and provide caregivers to our home. More than once, we got caregivers that I had to fire after one day, or one hour, because they had no idea what they were doing, or because they felt the need to try to share their religion and convert Mary, or because they fell asleep on the couch and didn’t hear Mary asking for help. Several times, I showed up at the agency’s office to meet with the manager and file formal complaints about their staff.

Finally, we got a team of 3 or 4 good caregivers. That lasted a couple of months before one decided the disease had progressed to a place they were no longer comfortable with, and one other was pulled off of Mary’s team because their attitude changed. There were days I couldn’t go to work because a caregiver called out sick and there was no backup, despite the fact that I was constantly requesting that they have five people on Mary’s team to cover those situations. On those days, Mary often had to stay in bed because it took two people to safely move her to her wheelchair.

We had one consistent caregiver that I could trust with Mary’s life, that Mary absolutely loved, who had previous experience with ALS and was quick to learn and adapt to the disease progression. ONE caregiver. And me.

For those whose insurance doesn’t cover outside caregivers, the annual bill for caregivers can be over $200,000 out of pocket. Medicaid allowed Mary to stay home longer by providing outside caregivers so that I could continue to work to keep our home. Without Medicaid, I would have had to quit my job to care for her, which would have quickly made both of us homeless. And that is just the cost for caregivers; it doesn’t include the cost of medical care and equipment.

There is a reason ALS is called “The Bankruptcy Disease”.

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By bansagart, ago