Getting patient's life in order

First, the patient is an incredible person who always took care of others which makes her illness a huge family crisis. She is unmarried with no children and her brothers are now in charge. The local one is quite overwhelmed as he works, has a family and has the elderly mother to look out for now. What are some issues that need to be addressed before she eventually leaves the hospital it rehab center? No one has POA of health attorney at this time. I keep encouraging them to get on this and fear it might be too late.
Thanks for your wisdom learned from experience.

Hey ConnieG,
Having worked in the ‘caring industry’ I have a bit of knowledge here, by no means am I saying ‘I know it all’, because I don’t. Every jurisdiction is different and has it’s own rules/regulations.
Do you know if she has a current will? Is there an executor named within the will? Is the executor and the person with POA the same individual? This can be perceived as a conflict of interest, in which case they ‘can’ sometimes overrule the POA. Here in Australia you can have a POA, but within a hospital environment this can be overruled by dr’s by them saying “It’s only a financial POA”. Be sure that it’s a Full POA that includes medical or a separate medical POA.
Do you know if she has a current will? Are her health wishes listed in her will. It can be advisable to have such wishes documented and certified and not just verbal. I say this because if it is only verbal, it can be open to interpretation or seen as hearsay. It can be a very harrowing time for family and at times conflict can arise over the ‘best’ decisions. I say ‘best’ because “Best for who?”. Also, if the patient becomes non verbal and those wishes are not documented then the medicos can takeover, often sustaining life when there is very little chance of recovery. If the individual wishes to be kept alive at all costs, have it documented. If the individual wishes not to be kept alive by artificial means, have it documented.
What sorts of post hospital services are available? The individual patient’s need’s and abilities are paramount here. For example, having a service that assists in showing how to boil water, when the patient already makes there own coffee is a waste of time, energy and money. It can also be very demeaning. Those skills that are already there need to be maintained. Often larger hospital’s have social workers attached, they ‘should’ do such an assessment, they should know what in-house and external services are available. And how to access such services. It would be advisable to investigate such services prior to the patient leaving the hospital environment so that these supports are in place. Having them in place prior to discharge allows for a continued progression of rehabilitation from the hospital environment to the home environment. In some situations the hospital situation is seen as separate, it shouldn’t be. If it’s all about rehabilitation, that rehabilitation can continue for many years depending on the extent of the injury. Having a break from utilising those skills breaks that rehabilitation progress.

DOH, I’ve just read through all of that, it’s a bit long winded and I apologise for that. But in my opinion, not knowing the people involved, nor their abilities, that covers a bit of everything.
Please, if you want more information, ask. As I say I DO NOT have ALL
of the answers and there are many, many variables, but if I can assist I am more than willing to do so.

Hope it Helps
Merl from the Moderator Support Team

Thank you for your reply. First, I want you to know that I am not at all in charge of the patient’s destiny and am only providing info to the few who are. It is a difficult place to be since the family does not want much advice. Unfortunately, the main person in charge is now also in the hospital and the chaos is reaching a fever pitch.

Thus far, the person in charge has not been very proactive. I emphasized the need for someone to get a POA and health POA and unfortunately, the patient is still in ICU with even more complications. I’ve begged them to reach out to the social services at the hospital and they just say “We will look into it.”

I totally agree with everything you said. In the past, I have had to take total control of my parents’ medical and financial situations and thing were handled well with no one else complaining. It was a good feeling to make informed decisions and have them end life with no regrets or chaos on my part. When I was cast into the role of caregiver, I sought out anyone’s advice that would offer it. Few of us are equipped to handle the challenges and decisions of a medical crisis.

I am involved with this patient because her family’s problems seem to become my problem financially and with caregiving. Unfortunately, I am kept at a distance and given only lip service until things explode. Then, I am asked to travel from a state many states away and help out. It is sort of like Groundhog’s Day.

I doubt there is much I can do at this point as suggestions (like the need to talk to social services, get a POA, etc.) are not appreciated. Thank you for your response.

That can be a REALLY difficult position to be in. But one that, in all honesty, is not within your control. All you can really do is gain the information, provide it to those concerned and see what happens. Trying to instigate action can really blow up in your face and destroy any relationship you have with those concerned, Groundhog Day is a very good analogy. And frustration is a very common outcome. I have been in a very similar position and I did the wrong thing by saying “Told you so…” and all hell broke lose. I ended up being the worlds biggest a…hole by the end of it all. My advice… …ahh don’t do that. I am continually recommending people get a Medical POA, but 90% of people are of the thinking “Well, that will never happen to me…” until it does and by then it’s all too late. Nobody ever wants to look at this EVER, but the reality of it all is that tomorrow you could walk out your front door and get hit by a bus. Then what? It’s not until you have to confront this sort of thing that the reality of it all hits home.

I do not envy you one little bit. Just remember through all of this that you have to look after you. I have seen the ugly end results of this sort of situation repeatedly. Be there for your friend/family member, but remember ‘you’ too. When the final steps do arrive those people are going to need that support, so don’t be burning out now or you will be no use to those who need it when that times comes.

You can only provide the relevant information for them to make the decisions and it sounds like that is exactly what you are doing. From there the decisions are not yours to make.

Merl from the Moderator Support Team

Thank you for your wisdom. I’m prepared to take once again (like I have so many other times) bring my grandchild to live with us for a while, but this time will put her in preschool now that she is older. Sigh. Now with two people in the hospital, (the patient and the person in charge), things will surely change.