Last December, our family endured a great deal of turmoil as the matriarch of our family, my dear mother-in-law, suffered her second COPD exacerbation in a matter of weeks. This second time, our family was forced to make a crucial and quick decision: place her on a mechanical ventilator or place her on comfort cares.
My mother-in-law had Advanced Directives written and in place. She had completed a Living Will which named exactly what she wanted to have done should she become incapacitated (unable to make decisions herself). However, that Living Will was written over 15 years ago, prior to the decline of her health due to advanced COPD (Chronic Obstructive Pulmonary Disease). Her Living Will, written while she was still active and healthy, stated that she wanted tube feedings, wanted to be a Full Code, would be okay to be placed in a nursing home, and wanted to be placed on a ventilator.
There she was, lying in her ICU hospital bed, non-responsive, hooked-up to a biPaP machine to help control her extremely high and ever-rising CO2 levels, when my mother-in-law’s Pulmonologist and ICU team sat us down and told us of her failing medical condition. The Pulmonologist stated that because of her rising CO2 levels, rising blood alkalosis levels, and labs showing the possible beginning of failing kidneys, the family would have to make a decision, and make a decision within the next 10 minutes.
My husband and I were the only family in town besides my father-in-law who was torn up and at a loss over the sudden decline of his wife, his partner, his soul mate. We received all of the facts from the Pulmonologist and the ICU Hospitalist and went into the waiting room with my father-in-law. We talked about the Living Will together, reviewing her wishes from over 15 years ago, and tried to figure out what she would want done in this situation. Would she truly want to be put on a ventilator with little hope of ever coming off the ventilator, and most likely be transferred to a nursing home to live out the rest of her life? Her Living Will DID say she did want this. Or, would she want to be kept comfortable without a ventilator, off the biPap for the remainder of her time here with us? Boy, did we struggle over trying to figure out what her wishes would be in this situation. A woman so full of life, full of love, full of compassion, full of pride: What would she really want in this situation? We were torn, heart-broken, and now stressed trying to make the “right” decision.
We decided that it would be important to bring in all of the other siblings/children to discuss what her wishes would be in this situation. So, one by one, we called my husband’s out-of-state brothers and sister and explained the situation to each of them. Together, we all tried hard to decide what she would want. Our true wish, that each of us verbalized, was that she would have updated her Living Will, or completed a Health Care Power of Attorney, or even discussed what her wishes would be in different dire health care situations.
We had less than 10 minutes to decide what to do, because her CO2 levels were increasing quickly and if she were to be intubated, the ICU Staff would need to act quickly. If they intubated her and put her on a ventilator, she could be on it for years, and would have to go from the hospital to a nursing home. If they left her on the biPap, her CO2 levels could continue increase to levels that would cause her death. We had another option too: to take her off of the biPap and put her on hospice services. So many options, all so bleak. What would she have wanted? We all struggled emotionally with this decision.
Advanced Directives are documents that can help your family members if you were ever in a medical situation where you couldn’t make health care decision for yourself. There are many different types of Advanced Directives, but the two most common/familiar are the Living Will and the Health Care Power of Attorney. Both of these documents ONLY come into play if you can not make health care decisions for yourself. As long as you are alert, oriented, and able to make informed medical decisions yourself, you will.
The Living Will is a document that states exactly what you would want to do in situation of:
- Tube Feedings
- Code Status (Full Code vs. Do Not Resuscitate)
- Mechanical Ventilation
- Antibiotics or Antiviral Medications
- Organ and Tissue Donations
- Body Donation
- Comfort Care
The Health Care Power of Attorney is a document that names someone (with an option for a back-up name) to make decisions on your behalf, should you be in a situation where you can’t make medical decisions yourself. You will choose a proxy (or two) which is the name of someone who will make your health care decisions. The Health Care Power of Attorney would only come into play IF you were unable to make decisions for yourself. As long as you can make medical decisions for yourself, you will. (Yes, I wrote this same thing in the previous paragraph but it’s important to understand this information).
When you complete your Health Care Power of Attorney and name a proxy, it is important to tell that person/proxy what you would want done in different situations. Make sure your health care wishes are expressed to the proxy.
If my mother-in-law had updated her Living Will or named a Health Care Power of Attorney proxy who knew her wishes in dire health care situations, it would have been much less stressful coming up with the decision on her behalf. We could have spent more time at her bedside holding her hand and being with her, rather than having tearful, stressful, decision-making discussions with all of the family members.
As a gift to your family, learning from the experience we went through, I highly recommend the following (two things):
- Complete a Living Will, update it frequently, and talk to your close family members about your choices in the Living Will
- Completed a Health Care Power of Attorney, name a proxy and talk to your proxy about your wishes should you ever be in a situation where you can’t make a decision yourself.
Living Will and Health Care Power of Attorney documents can be found online or in your doctor’s office. You don’t have to go to an attorney to complete these. Some states require a witness, some states require it to be notarized. Here is a link to FREE Advanced Directives forms by state (with requirements for each state).
All adults, regardless of your age or family situation, should have these Advanced Directives completed. Do you have yours completed? Have you talked to your spouse and/or family about your wishes?
As a gift to your family, please complete your Advanced Directives. It could make an emotionally difficult situation just a bit easier for your loved ones.
Visit http://www.hospice-101.com for more information about hospice, and/or to access other health-related blogs and articles.