advanced care directives

I did my health care directive this spring. It's quite simple, you get choices about resuscitate or not, and what may be done with your remains. You can get a form that you just check the boxes and you may add something that is important to you. For me the only thing I added is what should be done with my cat and dog which is not technically what it is for. However, I want to make sure that someone knows that they exist should something happen to me.

I'm like you, it's early days but I wanted to be sure to do it before I need it. I was scared even thinking about it. It turned out to be a good experience. I sat down with my husband and my sister in law last week. She is a nurse which was handy, but really I chose her as my back-up representative thinking she would be there as support for my husband. It was VERY emotional for all of us. But we had a good discussion about what we wanted and figured out how to get that onto the forms (we were all filling ours out).

The paperwork is important too, but really it was the conversation that is the most important I think. We went through a lot of tissues, but found it cathartic. Once we were all cried out, it felt good to have all our worst fears out in the open.

hi melp27,

I am just going through the very detailed process... I had to really bug for a referral to the palliative team but when I finally got it, it was the right thing to do.

I met with two palliative docs first for more of a history and "get to know you" session. FYI, I worked at a high level in Stroke and Brain rehab for a long time so I am well aware and not afraid of the possible consequences that I might face in 2 months or 3 years. My experience has led me to see that just because you have a stroke or Heart attack, how you look right after is definitely not how you might look in 3-4, 6 weeks etc.

I have chosen to tell my POAs to really listen to the docs on prognosis and know that I am okay with being "let go". But also, if the docs and rehab team say that they need more time o describe what might happen, I want that time.

I have Brain mets but a very well controlled systemic cancer. My thoughts on this will be more in keeping with my good function now and knowing that I'm not going to get off Scott free from this disease.

The most important thing, for me is coming up... I'm sitting with the palliative docs and discussing or rather, working through what my values are..These values will consider what deficits I will be okay to live with and will also discuss the possibility of Dying with Dignity ( euthanasia) . And then I'll have an appointment again to discuss my wishes with the docs and my POAs.

I take this very seriously and when this process is complete, I'll feel more confident about being able to live more freely without putting undue stress on my loved ones.

I am certain you should have access to a palliative team and if not your government probably has documents that help you work through the process. Remember, your wishes are your own and should only be influenced by your values and experiences

Take good care and good luck!

Jojo

I am new to the Brain mets as well. My family and brothers who are POA/alternate POA are clear that as per my directives, I do NOT want to be kept alive at a mental deificit.

Though the paperwork did not get filled out yet in lieu of all the other paperwork ie disability (if needed), my family is 100 percent on board I would not be kept alive in some sore of persistent vegetative etc. The directives will get done after surgery as I know I will have some extra time.

Good luck with everything. It certainly is a tough time.

I'm always sorry to hear when a young person has to face this issue and that cancer is the reason for it. One of the things I would suggest is you start with a document called The Five Wishes. It's less intimidating. Most of the Advance Directive forms that you see used by hospitals and nursing homes are solely directed at the technical aspects of end-of-life care. This document is more personal and humane.

Then have a discussion with the person who you designate as your decision-maker. And the suggestion about including a clergy member is good - but social workers are very skilled with helping people finish these forms.

I would also like to say that you shouldn't think of completing this form as an automatic assumption that you are going to die. The treatment for MBC has gotten so much better and it may be years before the document is needed. But the discussion with your family is very important.

Many states already require the POLST form. In Colorado, it's called the MOST form and has been used by hospitals and nursing homes for several years. The basic concepts in it are also covered in The Five Wishes but the MOST or POLST form is legally binding for healthcare professionals and was developed to help members of the healthcare team know what "rules" to follow when dealing with seriously ill or life-threatening situations.

As you can imagine, end-of-life care is an emotionally charged situation where a caregiver walking into a situation needs guidance about what to do. Prior to these forms, the assumption was a nurse or paramedic always administered CPR/Advanced Life Support unless there was a physician's order stating not to. And for paramedics transporting a patient to the ER, advanced directives were not legally binding. The paramedics were required to administer CPR/Advanced Life Support.

Now, we are required to follow the MOST or POLST form.

There was a well-publicized incident involving an assisted living center where the caregivers called 911 but wouldn't administer CPR at the request of the 911 operator. It created a lot of negative publicity on the Internet and people assumed that the caregivers were negligent for not administering CPR. It turns out that the patient and the family didn't want CPR administered by the caregivers. But licensed caregivers live in fear of lawsuits and the potential for legal actions against their licenses for not acting according to the patient's wishes, regardless of which side of the question the patient is on.

The chances are, if you enter a healthcare facility, they will ask you to sign a POLST Form or MOST form because it's considered a physician's order.

But it still is based solely on the technical aspects of end-of-life care and not the personal side, where the patient gets to tell people what they want while they are dying.