As I write this, I lay watching my daughter’s body spasm and her body continues to fail her. Bea’s terminal illness is nearing the end. There is no worse phone call than the one to establish end of life decisions, advance directives, living wills, DNR, and allowing a natural death to occur. The legal terms are confusing, and even more so when it is your child who slipping away. What is a living will? Is that something you can make for a child? Advance directive vs living will…What’s the difference between the two? Where can I get free living will forms? So many questions! Let’s put them in some easy to understand terms!
As a mother, a parent, these decisions need to be made in order to allow our family’s wishes to be legally carried out.
Just thinking the words, “I do not wish for my daughter to be resuscitated and need a DNR,” causes anxiety and stress. Making them official in the eyes of the medical and legal world, is another experience entirely. With that said, before we request a DNR, we first need to understand exactly what we want to happen and what we need to do to accomplish that.
How do we come to a place where we make these incredibly hard decisions? Our daughter’s condition is pretty clear-cut. There is no cure or treatment for A-T. To put her body through the process of resuscitation would be excruciating for her, and the quality of life she would return to would not be one I would wish on anyone. Despite all of this, it still crushed us to come to the decision that she needs a DNR.
How does one decide when to create a DNR for their child?
- Is this a decision I can live with? Will I continually beat myself up over making the choice to have a DNR?
- What is the quality of life expected to be if we do resuscitate?
- Is resuscitation even an option for our child?
- Are you on the same page as your child’s other parent/s?
- What does your child’s specialists believe is the right decision?
- Is your child old enough to have an opinion on the subject?
The Center for Bioethics and Human Dignity had this to say:
“Another situation that frequently occurs is that of a chronically ill or terminally ill patient in which CPR could potentially extend life for an indefinite period, but at a severe cost to the patient in terms of suffering. This suffering could be either the direct result of CPR or the result of the ongoing disease process.
In either case, the issue becomes one of determining whether the burdens of the treatment are commensurate with the possible benefits.
The decision is subjective and patients are unique in their assessment. The patient has a very clear task to distinguish between burdensome and beneficial treatment.
It is not inconsistent with Christian thought for a patient to decline CPR if they feel the burden outweighs the benefit and life is unlikely to be sustained in a meaningful way.
It is at this point that communication between patient and physician is paramount. There is great confusion on the part of the general public regarding the success rate and risks of CPR. For an ethically valid judgment to be made the patient must have accurate information; the physician must explain clearly.”
Creating a Living Will to Preserve Human Dignity
Human dignity is widely accepted as the idea that everyone has value and worth. It often goes on to also include that each individual has the right to food, shelter, love, security, and basic needs. How does that translate to our end of life decisions? Some good examples are questions like, “Do I want to die at home or in the hospital?” Further, how do I feel about feeding tubes, autopsies, cremation, funerals, burials, and so much more. It’s all about placing value on our opinions and emotions surrounding the transition from this home to our next.
What is intubation?
While sedated under anesthesia, a flexible plastic tubing is inserted in your mouth and down your throat, so that oxygen may make it to your lungs. It is used when there is a need to get oxygen to the lungs. For this purpose, you need to include your wishes regarding intubation on your advance directive and living will.
Effects of intubation?
Complications are rare, but no procedure is completely free of risk. If you are planning to have intubation and mechanical ventilation, your doctor will review a list of possible complications, which may include:
- Damage to teeth, lips, or tongue
- Damage to trachea (windpipe), resulting in pain, hoarseness, and sometimes difficulty breathing after the tube is removed
- Esophageal intubation (when the tube is accidentally inserted into the esophagus and stomach rather than the trachea)
- Low blood pressure
- Lung injury
Some factors that may increase the risk of complications include:
- Neck or cervical spine injury
- Pre-existing lung disease (eg, emphysema )
- Poor condition of teeth
- Recent meal
What is a living will?
A living will is a legal document that expresses how you want end of life decisions to be handled. These wishes may relate to resuscitation (DNR,) CPR, intubation, a feeding tube for additional nutrition, blood transfusion, hospitalization, life support, or IV fluids. A living will is also known as an advance directive, but they are only for those 18 and older.
Creating your living will and why it should happen prior to hospitalization.
If the first time your plans are being hammered out are inside of the hospital, this could lead to additional stress for you and your family. If I am unable to communicate my wishes, then the decisions will be left to my husband, mother, and children. That’s a lot of opinions and emotions that are running high. Specifically, it may not be easy to get everyone to focus on the decisions that need to be made, move past guilt and fear of making hard decisions that are in my best interest, and to even remember if I have stated my wishes in the past. The best choice is to make sure that my loved ones aren’t in this position.
Where can I find free living will forms and advance directive forms?
CaringInfo is a National Hospice and Palliative Care Organization, which has information about creating a free living will and advance directives. There are clear directions and wonderful tips to help direct you.
What is a health care proxy? How do I choose one?
A health care proxy is someone you choose to made medical decisions for you if you are unable to do so. Sometimes this is also called a “durable medical power of attorney.” Don’t you just love how there are several names for the same thing? This doesn’t mean that they are allowed to override your choices if you are able to express them!
It’s important to have a living will (which states what you want to happen) and an advance directive (the big picture of what you want done with your end of life story,) so that your health care proxy (the one executing your wishes to the best of their ability,) can make the best decisions they can that are in line with your wishes.
Should you choose your spouse? Well, that’s quite the personal question. I will let you make that call. In all fairness, some folks like to have the person closest to them and knows them the best to make the critical decisions in an emergency. On the other hand, some people want a more removed health care proxy, one who will be less emotional and perhaps more able to execute hard decisions. This all boils down to personal choice. What I cannot stress enough is to bring everyone together to discuss why you are choosing the person you are, what your wishes are, and where your paperwork is located.
How can I keep my advance directive in order?
- Get a bright red folder for each person in your family.
- Put the paperwork inside the folder.
- Put it in a safe place.
- Tell your family and those that need to know where the folders are.
It’s that simple!
Where should I keep my DNR?
- On the side of your fridge.
- In your glovebox.
- In an envelope in your purse.
- In your medical folder.
In the end, what matters most is the trust you have in those you love to help you make one of life’s biggest transitions. My personal goal is to see my daughter leave me with as little pain, the most dignity, and in line with her own wishes. Planning for the end of your life or for the event of an emergency isn’t glamorous or uplifting. The truth is, it is an important task on your long “to do” list!