This type of situation had never been discussed with her mother or her siblings. As Natalie turned to her sisters for a solution, the doctor stated they had been asked the same question and could give no answer. No one had a health care power of attorney, or designation of health care surrogate.
Natalie, turned to the doctor and said, “If mother will not breath on her own then stop and do not use a ventilator.”
This was an end of life decision that had to be made immediately.
Natalie’s mother never took another breath and had died peacefully and quickly. The emergency room doctor, thanked Natalie for her brave decision, stating that most families ask for the ventilation to have more time and the medical team must comply even though they know the same decision will need to be made again later.
Family communication at the end of life, about your own desires and what type of medical and emergency treatment you want, can relieve the confusion and anxiety that comes with a medical emergency for both yourself and all involved.
An AARP survey states,” More than 90 percent of people think that it is important to have conversations about end-of-life care with their loved ones, yet less than 30 percent have done so. Similarly, 70 percent of people say they want to die at home, but in reality, 70 percent die in hospitals or institutions.”
Whether you are caring for a family member who is terminally ill, or you, yourself want to have a say in what happens to you in an end of life situation, a conversation must happen.
End of life conversations between family members can help individuals understand and participate in the end of life process while their terminally ill loved one is still present and can help in the process. It may not be easy at first, and it may take time for everyone involved to be comfortable in joining the conversation.
Not to long ago I was involved in another family’s end of life decisions. My long time client was on a ventilator. Instead of a living will, we prepared for her, at her direction, a “will to live.” She provided instructions that she was to be maintained on life support as long as possible. Yet, here she was on a ventilator, with no reasonable medical probability of her recovery. The doctors recommended the ventilator be removed. Her daughter, who was her designated health care surrogate, called and asked that I come to the hospital.
I went to the ICU section of the hospital to meet with my client of many years. I “spoke” with her through squeezing of hands. She still had mental cognition and could understand me. But, she had no ability to speak. After “talking” with her for a few minutes, it was clear to me she did not want the ventilator removed. I told her daughter that her mother did not want to remove the ventilator. My client stayed with us for another five weeks before she finally was unable to continue the fight for her life. Her desire to remain alive as long as possible was fulfilled, because she took the time to have legal documents prepared that expressed her desires. She had difficult end of life conversations with her children. Everyone was on the same page because the client prepared that page, with her desires in mind. Very important end of life communications for her.
Here are some suggestions for your conversation from the AARP website;
- When you think about the last phase of your life, what’s most important to you? How would you like this phase to be?
- Do you have any particular concerns about your health? About the last phase of your life?
- What affairs do you need to get in order, or talk to your loved ones about? (personal finances, property, relationships)
- Who do you want (or not want) to be involved in your care? Who would you like to make decisions on your behalf if you’re not able to? (This person is your health care power of attorney)
- Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best?
- Are there any disagreements or family tensions that you’re concerned about?
- Are there important milestones you’d like to be there for? (The birth of your grandchild, your 80th birthday)
- Where do you want (or not want) to receive care? (Home, nursing facility, hospital)
- Are there kinds of treatment you would want (or not want)? (resuscitation if your heart stops, breathing machine, feeding tube)
- When would it be OK to shift from a focus on curative care to a focus on comfort care alone?
Planning your final days is an invaluable gift to give your loved ones. It will bring peace of mind and comfort for family to know that the decisions they may have to make are what you would want them to do for you.
When determining your medical preferences, you or your loved one will need to complete written documents called advance directive forms. These are legal documents that will allow medical and professional people to carry out your wishes. Most important are a Living Will and Designation of Health Care Surrogate (sometimes called a Health Care Power of Attorney).
The Living Will tells the medical professional your wishes if you are unable to speak for yourself. You can put any directives on it that you want, such as whether you want mechanical ventilation, surgeries, etc.
The Designation of Health Care Surrogate gives authority to the one (or more) you appoint to make medical decisions for you when you are not able to communicate with your health care professionals. This should be someone who will follow the directives you have requested. It should be someone with whom you have had end of life conversations.
We can help you prepare these documents to reflect your desires and wishes. Florida Statutes require that there be two witnesses to your signature and there are various statutory provisions that must be incorporated into the documents.
Once you have these medical directives completed be sure to place copies with your medical doctors, hospital records, and family members. With these advance directives in place, and you engaging in end of life conversations with your surrogate(s), your can be reasonably confident your end of life decisions will be yours.