Live or Let Die: My Thoughts on Advance Care Planning

Live or Let Die: My Thoughts on Advance Care Planning
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With my dark sense of humor, I was obsessed with death long before being diagnosed with primary sclerosing cholangitis and Crohn’s disease. I don’t understand why death is so taboo when every breath takes seconds from our lives. Dying became more than an existential crisis only when I became ill in my 20s and had to make legal decisions about my life — and death, for that matter.

Back then, I depended on patient forms to make advance care planning decisions. Advance care planning allows my healthcare team and loved ones to know how I want to be cared for if I’m incapacitated. I didn’t get a proper will until I almost died from sepsis in my 30s. My living will includes medical directives such as do not resuscitate orders, palliative care, and end-of-life decisions. My lawyer also drew up documents for my medical power of attorney.

Naming a medical power of attorney

While a regular power of attorney is authorized to handle financial decisions, a medical power of attorney can only make health-related decisions. A medical power of attorney can be a spouse, family member, or friend.

Before I was married, my older sister was my medical power of attorney. She lived nearby, and I believed she would make rational decisions. I was afraid that if I gave medical power of attorney to my parents, especially my mother, their emotions might cloud their judgment.

I had the same concern with my husband. Before I updated my will and named him my medical power of attorney, I had to be confident that he would be strong enough to follow through with my end-of-life decisions.

Do not resuscitate orders

A common medical directive is a do not resuscitate order, which states that the patient doesn’t want CPR if their heart or breathing stops. CPR could involve mouth-to-mouth resuscitation, chest compressions, defibrillation (using electric shock to restart the heart), medications, and intubation to open the airway.

One option related to a do not resuscitate order is a do not intubate order. This allows healthcare professionals to perform all forms of CPR except intubation.

Medical paperwork usually asks for a patient’s do not resuscitate preference, so a patient could base their decision on medical circumstances. I included a do not resuscitate order in my will. I’m also a member of a medical alert program that informs paramedics of my refusal for CPR if I’m ever involved in an accident.

Palliative care

Because I knew my liver would fail from primary sclerosing cholangitis, and after I had sepsis in 2006, I added instructions for palliative care in my medical directive. Palliative care allows the healthcare team to continue treatment and ease a patient’s suffering to improve quality of life.

My directive states that if hospitalized, I want to receive medical treatment as long as I have a chance for survival or recovery. Otherwise, I want only medication to keep me comfortable. If I’m in a vegetative state, I don’t want to be placed on life support, including a feeding tube or a ventilator.

I also have a stipulation regarding the need for a liver transplant. If I’m incapacitated by liver failure, I have instructions to be removed from, or not to be placed on, the national transplant registry.

I will admit, however, that I had a change of heart after I called my husband to tell him I had a donor. We had been married for only 15 months, and I wanted more time with him. After speaking with my caseworker, I was able to override the directive. I emailed her and my husband that I would accept a second transplant if the first one failed. After a successful surgery, my original directive stands.

Other end-of-life considerations

Along with my advanced care directives, I’ve informed my husband and family that I’m a registered organ donor. As a transplant recipient and advocate, I’ve learned that registering as a donor removes the burden of organ donation from loved ones who may be overcome with grief.

With my diseases and medications, my organs or tissues might not be viable for donation. Whatever can’t be donated, or my whole body, will go to the United Tissue Network for scientific research. My body has been an enigma for all my doctors, so surely some scientific wonder must lie inside. Plus, once my body has been studied, the network will cremate my remains and return them to my husband. I had planned to be cremated anyway, so I figured I would save him thousands of dollars. All he has to pay for is shipping and handling.

My autoimmune diseases have controlled how I’ve spent my entire life. With a living will and advanced directives, at least I have some say in how I die.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.
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Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.

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