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father on trach/vent 41 days. Communicates for a minute and then unconscious again. Dr will not say temporary or permanent. Still in ICU but thinking of moving to palliative care. What do you think?
Hi, sorry for ur dad's condition. If he's been conscious on occasion, the Dr may need to get dad's own permission to remove vent, (unless he has already signed DNR papers upon admit). Also, unless ur the designated health proxy person, u may have to get all ur siblings to agree with u about extubation, ect.
What are long term goals and prognosis? Palliative care is great and will help a lot. Hospice is great and will also help you a lot. I suggest talking to Hospice/Palliative and see what they say and what the prognosis and what extent you want to go. What were your fathers wishes? What would he want you to do if he were able to tell you. What would be the perfect answer for me might not be the perfect answer for someone else. Also have a long discussion about "tube feeding" as I am sure this will be addressed. With the "newer" POLST form there is a section on "Medically Administered Nutrition" (tube feeding) the selections are Long term medically administered nutrition, including feeding tubes OR Trial period of medically administered nutrition, including feeding tubes (then it gives a line for length of time) OR No medically administered means of nutrition, including feeding tubes (this option also gives a line for additions instruction eg, length of trial period) There is no "right" or "wrong" decision it is a difficult one and you are going to be pulled in two directions. Your HEART will want you to make one decision and your BRAIN may tell you to make another. While you may want to listen to your heart pay close attention to your brain that is the one that will make the right decisions.
You would be the one to best know his wishes in this matter, as his family. I would never want this and I have made my wishes never to receive artificial feedings, or intubation and ventilation at this point, and have made my wishes clear to family and written them in my advance directive. This is a very long time, at an advanced age, to be on this heroic measure. I personally would be moving the elder I loved to palliative comfort care at this point. These are very personal decisions best made by us before need and by our families, who know us, when we can not longer make these decisions ourselves. I am sorry you and your family are going through this.
I think there are likely a lot of variables here, and that you may get conflicting opinions from treating physicians.
Some underlying issues to address first:
1. Why is he trached and on a vent? What were the conditions precedent? Is he in a medically induced coma?
2. If "the doctor" won't say whether it's permanent or temporary, (a) what kind of doctor is this? Pulmonary? Cardiac? PCP? (b) What do other treating physicians say?
As an example: my father experienced multiple complications at 85 (after overworking to "lose" himself just after my sister died), was induced into a coma b/c of pulmonary issues, and was intubated, then trached. After 3 weeks he came out of the coma, and spent the next 6 months trached, unable to speak at all most of that time. He was dysphagic when he eventually was released after a month of rehab, including speech therapy. All total: August to March of the following year in institutions.
After a few months of tube feeding, and intensive dysphagic exercises, he was able to begin eating again. PT helped restore physical function. He lived to be 99.5 years old.
So, there is a possibility, depending on your father's history, how the current situation arose, co-morbidity issues, mental strength, quality of doctors, and of course you and your ability to provide a lot of support once he is decannulated and released.
I would get all the facts suggested above, consult ALL the doctors, and raise all the issues you can, then consider whether or not PC or possibility of condition reversal is appropriate.
This is and will be a challenging time for you. Make sure that you get as much rest and peace as you can, while you can.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Palliative care is great and will help a lot.
Hospice is great and will also help you a lot.
I suggest talking to Hospice/Palliative and see what they say and what the prognosis and what extent you want to go.
What were your fathers wishes? What would he want you to do if he were able to tell you.
What would be the perfect answer for me might not be the perfect answer for someone else.
Also have a long discussion about "tube feeding" as I am sure this will be addressed.
With the "newer" POLST form there is a section on "Medically Administered Nutrition" (tube feeding) the selections are Long term medically administered nutrition, including feeding tubes OR Trial period of medically administered nutrition, including feeding tubes (then it gives a line for length of time)
OR No medically administered means of nutrition, including feeding tubes (this option also gives a line for additions instruction eg, length of trial period)
There is no "right" or "wrong" decision it is a difficult one and you are going to be pulled in two directions. Your HEART will want you to make one decision and your BRAIN may tell you to make another. While you may want to listen to your heart pay close attention to your brain that is the one that will make the right decisions.
This is a very long time, at an advanced age, to be on this heroic measure. I personally would be moving the elder I loved to palliative comfort care at this point. These are very personal decisions best made by us before need and by our families, who know us, when we can not longer make these decisions ourselves.
I am sorry you and your family are going through this.
Some underlying issues to address first:
1. Why is he trached and on a vent? What were the conditions precedent? Is he in a medically induced coma?
2. If "the doctor" won't say whether it's permanent or temporary, (a) what kind of doctor is this? Pulmonary? Cardiac? PCP? (b) What do other treating physicians say?
As an example: my father experienced multiple complications at 85 (after overworking to "lose" himself just after my sister died), was induced into a coma b/c of pulmonary issues, and was intubated, then trached. After 3 weeks he came out of the coma, and spent the next 6 months trached, unable to speak at all most of that time. He was dysphagic when he eventually was released after a month of rehab, including speech therapy. All total: August to March of the following year in institutions.
After a few months of tube feeding, and intensive dysphagic exercises, he was able to begin eating again. PT helped restore physical function. He lived to be 99.5 years old.
So, there is a possibility, depending on your father's history, how the current situation arose, co-morbidity issues, mental strength, quality of doctors, and of course you and your ability to provide a lot of support once he is decannulated and released.
I would get all the facts suggested above, consult ALL the doctors, and raise all the issues you can, then consider whether or not PC or possibility of condition reversal is appropriate.
This is and will be a challenging time for you. Make sure that you get as much rest and peace as you can, while you can.