I would like to start by thanking everyone for the positive thoughts, prayers, cards and hugs since the death of my Dad on May 7th.
His loss leaves such a huge hole in the lives of my siblings and entire family, and it is the end of an era for us.
The thought that he is back together with our Mom has helped us all.
To say that he has missed her these past two years could not be more of an understatement.
A topic that I am very passionate about is allowing people to make end-of-life choices, regardless of what they are.
I would like to share with you information that will hopefully give you all something to think about and spark conversations within your families.
Is it a fun conversation? Absolutely not. But it is important and necessary.
After my Mom died, Dad named my sister and me his Healthcare Proxy.
A Healthcare Proxy allows a person to appoint someone you trust to make healthcare decisions for you if you lose the ability to make decisions yourself. (A form can be printed off at www.healthy.ny.gov/forms/doh-1430.pdf.)
This is a very important document to have.
When this form is filled out, make sure that the person you chose as a proxy knows exactly what it is you do and do not want with regard to your healthcare if you are unable to speak for yourself.
Even if a person is able to speak, they may not understand exactly what the healthcare provider is saying and may need help, a translator of sorts.
When my Dad was in the hospital, the minute a doctor/nurse/ tech, etc. walked in and said “Hi,” my Dad would point to me and say, “Talk to my daughter. The only thing I’ll understand that you say is “Hi.”
My Dad was an extremely smart man but didn’t know a lot of the medical terminology, the tests, etc.
Also, because he was ill, he was not necessarily thinking clearly.
Because we had the Proxy I was able to talk to the MD’s over the phone and in person and also sign paperwork. It made a difficult time a little easier.
I cannot stress how important it is for families to know what their loved ones wishes are regarding medical care.
My parents made their wishes known to all five of us years ago, but telling your family isn’t enough.
When my Dad was released from the hospital, he was on many new medications and there were several doctors to follow up with.
He took the medications and saw a couple of the doctors but never seemed to feel better.
One day he looked at me and said that he didn’t want to do it anymore. He had lived a long and good life and was ready to let nature take its course.
He stopped taking the medications and I cancelled all future appointments.
At that point we filled out a form called Medical Orders for Life-Sustaining Treatment (MOLST).
Many of you may be familiar with a Do Not Resuscitate (DNR) form.
The MOLST goes even more in depth and covers other aspects of medical care.
The MOLST consists of:
Section A: You can choose whether you want CPR attempted or DNR (do not resuscitate = allow natural death.)
Sections B, C and D are for signatures of the patient and doctor and to state what kind of advance directives you have.
Section E: The patient can decide what type of treatments they will allow. This is a completely personal choice. Make the choices that you are comfortable.
The choices are:
Comfort Measures Only – Medical care and treatment provided with the primary goal of relieving pain and other symptoms and reduce suffering. Reasonable measures will be made to offer food and fluids by mouth.
Medication, turning in bed, wound care and other measures will be used to relieve pain and suffering. Oxygen, suctioning and manual treatment of airway obstruction will be used as needed for comfort.
These efforts will not keep a person alive, but they will allow the person to be as comfortable, relaxed and peaceful as possible. Both my Dad and my husband made this choice and were able to leave this world peacefully.
Limited Medical Interven-tion – The patient will receive medication by mouth or through a vein, heart monitoring and all other necessary treatment. Again, these measures may not keep a person alive, but people often feel like they have to do something.
No Limitations on Medical Interventions – Patient will receive all needed treatments.
Instructions for Intubation or Mechanical Ventilation – You also have the choice to be intubated and have mechanical ventilation or not. The form gets as specific as allowing for a trial period to see if the patient will respond.
Intubation consists of placing a tube down the patient’s throat and connecting them to a breathing machine as long as it is medically needed. If you chose to NOT be intubated, the patient will be treated with oxygen and morphine to help with symptoms, such as shortness of breath.
Do you want to be hospitalized? Yes or no?
Artificially Administered Fluids and Nutrition – Do you want a feeding tube? You can choose a trial period or long term or not at all. You can also decide if you want IV fluids on a trial basis, long term, or not at all.
Antibiotics – You have a choice as to use them, not use them or determine on a case-by-case basis when infection occurs.
This form is then signed by you, the patient, and physician and it becomes YOUR plan. If you are unable to speak for yourself, this form designates exactly what your wishes are.
I had several people, including medical professionals ask, “And you’re okay with this?”
My answer was always, “It’s not about me.”
Fortunately, my siblings and I knew that it had nothing to do with us. It was about Dad’s wishes and that was all that mattered.
Yes, helping him fill out this form was hell, I won’t lie. However, I am begging you, if your loved one chooses to accept comfort care only, please do not try to dissuade them because you don’t want to lose them. It is about your loved one and the quality of life they choose for the end of their life.
It’s been over two months since my Dad’s been gone. I miss him and my Mom every single day. But I can honestly say that my siblings and I are at peace with the choices Dad made.
I feel so privileged that I could be home and care for him in his own home, in his own bed. He is at peace and with my Mom. It’s all good.