It is a difficult discussion to have but yet one that needs to happen.
What I am referring to is a discussion about end-of-life issues with a loved one diagnosed with Alzheimer’s disease. I have been asked many times about the right way and wrong way to have this discussion.
To be honest, each discussion is as unique as each individual.
Few of us ever want to discuss losing a parent or loved one but in the end, we all die. We can exercise, eat healthy foods, live a clean and sober life and these behaviors may extend our time on earth, but we will die. The sooner discussions occur around end of life planning and wishes, the sooner everyone concerned can go on with the business of living.
With Alzheimer’s patients, losing the ability to make decisions while still living can be especially stressful to family members. For someone with this disease, planning ensures that their wishes are met and they face the end with the dignity they so richly deserve.
The first part of end-of-life planning is preparing advance care directives. These directives may include a number of issues which I will review. Other plans may also include funeral preparation, comfort and care issues and what medical treatment should be provided.
The beginning of the process should include answers to the following questions:
How do you or your loved one want to spend the end of life? Should they remain home or in a nursing home?
How will the religious, spiritual or cultural beliefs be provided at the end of life. Each family is different and may have different needs. It is important that the person facing the end of life be honored and treated respectfully.
What medical treatment does the person want? How far should the facility go when the end is near?
Let’s talk more about the last question.
Because Alzheimer’s robs an individual of their ability to make decisions at the end, their wished must be known up front and those wishes respected by all who are providing care.
Medical care for late-stage Alzheimer's disease may include the use, withdrawal, limitation or refusal of treatment. Any advance directives need to be discussed with this in mind.
Aggressive medical care that will sustain life may include:
Cardio Pulmonary Resuscitation (CPR)
You may request your physician to sign a "do not resuscitate" (DNR) form, which is a legal order to prevent any attempts at revival, particularly if CPR or defibrillation is needed. If you do not want to undergo CPR or advanced cardiac life support, you must speak with your physician as he/she will need to write a legal medical order that will allow you to complete the DNR form. Without it, medical professionals are required to perform resuscitation on you.
A DNR does not affect any treatment other than that which would require intubation or CPR. Patients who are DNR can continue to get chemotherapy, antibiotics, dialysis or any other appropriate treatments.
Some states do not recognize DNR orders that were initiated out of state, so check with an elder law attorney or the hospital where you plan on traveling.
Your end-of-life wishes should also include how you would like to experience care in the final stage of Alzheimer's. Hospice services, also known as palliative care, focus on bringing comfort, self-respect and peace to the final stage of your life in an environment of your choosing — at home or in a facility.
Hospice care aims to ensure that symptoms and pain are controlled, and that goals of care are discussed and honored. A hospice care team may include a doctor, nurse, social worker, dietician, clergy and trained volunteers. They work together to address your physical, emotional and spiritual care as well as that of your family.
Hospice care is covered by Medicare and some private insurance; however, a doctor's order is required in order for you to be evaluated for and receive hospice or palliative care. To be eligible for hospice care, you must be in the end stage of a terminal illness with a life expectancy of less than six months. Hospice benefits may be extended if you live beyond this life expectancy.
Comfort care focuses on dignity and the quality of your remaining life. It aims to keep you comfortable and pain-free until life ends naturally. Comfort care does not mean withholding all treatments. A person can continue to receive any necessary medications for chronic conditions (diabetes or high blood pressure), as well as those that prevent pain and discomfort. Comfort care eliminates medical treatments, tests and procedures that may do more harm than good.
Many people have a concern that they are “signing their rights away” when it comes to making long term care plans. This is not true, in fact, early planning ensures that the person with the disease has a say in their care before the disease renders them unable to do so.
Once these documents are signed, they are distributed among all those responsible for their current and future care. This may include other family members, medical professionals, trustees, attorneys and financial planners.
Let’s take a look at some of these documents.
The power of attorney document allows the person with Alzheimer’s (known as the principal) to name another person (called an attorney-in-fact or agent) to make financial and other decisions for them. A power of attorney does not give the person appointed as the agent the right to make any decisions for them as long as they have legal capacity.
The power of attorney for healthcare allows that person to make healthcare decisions for the patient when they no longer can. These decisions include the issues I listed above.
The durable power of attorney for finances/property allows the individual to designate another person to make decisions about their finances which may include income, assets and investments, real estate and other property when they no longer have the capacity to do so.
A living will is a type of advanced directive that expresses the person’s wishes for what medical treatment they may or may not want near the end of life. It is an important document for family and medical professionals to discuss and sign before the disease progresses.
A standard will provides information about how the person’s estate will be distributed upon their death. In the will, an executor will be named (who manages the estate) and beneficiaries (those who receive the assets in the estate). The executor named in the will has no legal authority while the person is living.
In next week’s blog, I will explore trusts and guardianships but I want to end this week's post with a poem written by Owen DarnelI.
Do Not Ask Me to Remember
Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.
I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done.