As substitute decision maker are you asked to be present when professionals (doctor, dietitian, etc) evaluate your loved one in a facility?


I think once someone has lost capacity we need to have systems in place similar to those for minor children where the parent or guardian is always given the opportunity to be present. In my experience, their decision making without my input is one of my major stressors. I wonder is this just the way it is or are families given more opportunity to participate elsewhere?

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As POA for my husband's elderly aunt, I have requested that the doctor call me 24 hours before he comes to visit. I have a very flexible work schedule and I want to emphasize that she is in an assisted living facility and there is not a doctor at the facility at all times. I also have a pretty good relationship with the nursing staff and they have called me multiple times and asked me to come over and check on her as they think she is just not right. I have bought the nursing staff lunch and an occasional gift card for all that they do. That really goes a super long way with them. I know that she is covered when I am not there. I know that some people may not have funds to buy them lunch or a gift card, but even a note that says, "Thanks!!!" is super nice. I do want to remind you as I have to my aunt many times.....they have everyone to worry about and you have one relative....(I hope) that needs care......
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Reply to jbclync

This is not an answer. I just agree with what was said above.
If my opinion had been considered, my mother would still be alive. I was her caregiver and I still cannot comprehend what made my sister act like God to decide who should live and who should die.
I do not talk anymore to my 3 siblings for having sent my mother to the hospice that, in a matter of 14 days, killed my mother.
None of them was willing to take care of her and rarely visited my mother or ask me if I needed help.
I ended up in the hospital with 2 more compression fracture for 2 nights after a bear hug to place my mother in her wheelchair and I felt forced to request help and , it was enough 2 days away from my mother for them to decide that she had to die because they did not want the burden of her care.
I was never asked about her health and her records. I was lied about the hospice "compassion" and their palliative "care"; the hospice had it all planned to end her life in 2 weeks!!. I saw it written in hospice documents!! The hospital doctor had decided to give my mother "6 months"!

For God's sake! How easy is becoming for Hospices to get rid of senior citizens!!

My mother could not talk and was given the famous cocktail of death, morphine/ativan, so later on the hospice could say that the cause of death, among others things, because no evidence at all was ever presented, was "failure to thrive"! Just lies!! And they get away with murder.
My mother always kept her weight of 125 lbs, she enjoyed watching tv, her Ensure or Boost drinks, etc Are these "dying symptoms "!!??
I still feel guilty for not being beside her those 2 days I was in the hospital.
A POA to represent her would have allowed me to be heard and defend her against her executioners, my siblings and the hospice.
Today I cannot even get her medical records to find out what else they did to her during those 2 days I was away from her.
I am glad to hear that I am not alone in my thoughts. You can google it...
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Reply to kilhefner
Twillie Sep 11, 2018
OMG I never knew all this about hospice but now it makes sense. My dad was given morphine and ativan and died 2 weeks after he was admitted to hospice. I guess that’s all Medicare would pay for.
If you're Medical POA, you have every right to be present with your parent/doctor. YOU need to be able to talk with emergency personnel should something happen.
If you are GUARDIAN of your parent, they are considered under the Law as minors. I'm Guardianship/conservator for our Mother. None of my siblings can question my decisions, BUT I would not make any MAJOR decisions without talking with them and Mom's 2 brothers. I feel that those decisions are going to be extremely hard and I need to hear the debate. But, the final decision is mine. I make the decision as to whether the doctor can give information to my siblings....right now, the only other relative is Mom's youngest brother.
It's tough, but YOU have to stand up for your parent.
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Reply to dkentz72

My friend, Jim, for whom I have DPOA and who is in a memory care apartment I found for him, is seen once a month by a doctor or other health care professional to monitor his health. I am never advised of this ahead of time, nor have I asked to be notified so I can be there. I assume that is an option. I was there when the hospice care people first came for his wife's condition and agreed with their evaluation that it was time to start hospice. She only lived another 10 days or so as her brain was shutting down and she could no longer swallow.

Every so often I go to the health care services department and talk to someone there who can update me on Jim's latest results. My friend is pretty healthy physically, so it's not an urgent matter. I see him once a week or more on my own and he always talks about how healthy he is at age 92, mentioning it several times each visit since he can't remember what he has said. His weight is stable. I take him to his eye doctor appointment and dentist about every three months for each since he doesn't remember to brush his teeth and has had high eye pressure in the past. Knowing all his records are available to me whenever I ask about his health eases the concern of my needing to be there when the health people come to monitor him. If he develops a more serious health issue, I will become more closely involved. And, I should probably ask now how that would work so I can be ready. This facility has provided excellent care for my friends, and I am very relieved with this and glad I found such a good place for them.
Good luck. It shouldn't be an issue to be more involved when necessary.
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Reply to JohnnyJ

If you have POA you can tell the staff that you want to be present when your loved one is seen by doctors or other professionals. You will have to be available when they make their visits. If that is not possible you can request that the doctor's or other professionals to call you after each visit. I arrange this for my clients families and it tends to work well.

Guardianship gives a person the ultimate decision making power over another individual, but it is a court ordered, is costly and takes time to get (you have to hire an attorney to go through the process.) However, a good POA can give you the same ability to make decision for an individual.
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Reply to cjwilson

When you take your LO to the physician, go in with your LO.

I did it with my father and always have with my DH.

You don't need to ask, you just go with them.
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Reply to RayLinStephens
GraceLPC Sep 10, 2018
Always take notes, bring a small digital or mini-tape recorder and ask to record discussion. This eliminates a lot of unnecessary calls to doctors office, helps you clarify future questions you may have, evidence for LO of what was actually said.
If the doctor objects, find a new doctor!
When we send our loved ones with greatly reduced physical and cognitive ability into a care facility it is like sending a preschool age child, they can't advocate for themselves or make any sense of what is happening to them and can't be trusted to report accurately (if at all) what happens to them while they are there. I may be meeting with the administrator this week to go over my concerns and I have made myself a list of why I feel so completely out of the loop

"I don't know anything beyond what I see with my own eyes...

I don't know if she sleeps at night
her weight
if she ate
if she drank
if she's had any ventolin treatments
about her wound care
if she is ever taken to entertainment (no)
if she's had use of the ipod (not likely)
if she's been agitated or calling
I don't know there has been a fire drill or an honest to god fire call!!
if there is illness going around
you mentioned her getting music therapy with d....??
problems with her wheelchair, clothes, personal care items

Why is she in bed today?"

I can always ask (as I did when I found mom in bed this morning) but often the answer is "I don't know". And yes, I arrived at the NH yesterday to find my way blocked by fire engines and firefighters, if I hadn't seen it with my own eyes I wouldn't have know it ever happened! And why are so many residents carrying basins, is there noro virus in the building?
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Reply to cwillie

I believe it’s “guardianship” that is necessary. Durable power of attorney is different, although I’ve been fortunate that dad’s docs call me and discuss their findings.

Guardianship is granted by a court. It is expensive, and takes a while to obtain. However, it gives the guardian the right to make decisions both financial and health related. A court oversees guardianship, with mandatory check-ins four times a year to make sure the power is not being abused. Guardianship can be granted to a non-family member as well.
without guardianship, it is assumed that the patient has control over their health care decisions. Is the facility consulting or discussing the results with your loved one? Can you ask them to meet with you? If you would like to be present during consultations, I’d make it clear to them, but be prepared for them to ask if you have DPOA or guardianship.
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Reply to Rattled

When I take mom to drs I stay with her the whole way except for xrays & MRIs [I have knee replacements] - she always says 'I'm fine' when asked & won't give accurate info to drs - then I also know what was done & said - I have never had any office/dr/staff question it once the POA was shown - in fact they like to know that there is someone on the ball who keeps track of things -

Often I email my sister with the info [name, phone #, etc] & copy myself then put it in a special folder on my computer so I can find it fast if needed - I do this before going to bed that night so it is fresh in my head
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Reply to moecam

Haven't worked in a long term care facility (Nursing home) for a few years. However, nursing facilities should still be doing "care plan meetings". Family, as well as all care disciplines meet to discuss patient progress, well being and care needs.These meetings were held quarterly or whenever there was a change in pt condition. Also, facility supposed to inform family of any accident or change in condition. Even had to call family to ask if change in room was approved. Hopefully these things are still done.
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Reply to drooney
cwillie Sep 10, 2018
Care plan meetings are annual here, we just had our first since the initial one after admission. Quarterly makes more sense as there was way too much to cover in an annual meeting.
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