Designating
A
Healthcare Proxy
&
Insuring
Advanced Directives/a Living Will
The Importance of
Advanced Directives
for Patients
with a Progressive Disease
A diagnosis of any progressive disease (ie., MS, ALS, Parkinsons, Alzheimers, etc), can mean many different things for the caregiver and more importantly the patient. Unfortunately in my practice, I've seen way too many times where the patient and/or family was not informed of major arrangements and even minor decisions to be made while they still have the ability to make these decisions on their own consent, while they still have the ability to communicate their wants on their own.
My Graduate Supervisor taught this lesson to me and my fellow colleague while we were still students in a very astounding way, that I had always wondered if if he did it that way on purpose or not. My colleague and I that left that day, both in fraught and tears and took the 45 minute subway ride home that day in tears and speechless. Never was a day where we saw patients together. Yet to even observe, and observe we did, all three. We saw these patients consecutively, each progressively worse in their conditions, and each at the end stage of the same terrifying degenerative diseases, ALS also known as Lou Gherigs' Disease. What is most terrifying about this disease is because it is similar to "locked in" in that your body lessens in movement, but your brain is completely aware. You are not able to move or communicate, or eat, and you are completely aware of what is occurring around you.
The last patient we saw that day was a young woman (early 40's) with a daughter. She couldn't move anything except her eyes and although she was severely weakened, she was able to chew. This was my third time now listening to this conversation, but the most difficult to hear. My professor had a very hard conversation with the daughter about "has any Dr. explained to you what's going to happen?" The daughter answered hesitantly "no." Third time. Mind you, we were at an award winning prominent NYC Hospital (not that that really means anything these days). It was up to my esteemed Professor to tell this young adult what was happening to her mother. I've never heard cries like that. But I waited until we all left so I could cry. I stood against the wall holding my head up and kept eye contact with the patient at all times. He then explained why were there - This woman was looking at about 3 more months to live. She already had a feeding tube placement. He explained that we were there to assess her mother's swallow; to see if she can swallow safely. The answer was clearly no. The question was explained and purposed to her family, keep her NPO (Nothing per oral/mouth) for fear of aspiration? Or give her her beloved steak and let her enjoy her last few months not only through food but with with some sort of dignity - Quality of Life. Even if she does aspirate, and we'll try to take every precaution to prevent it from happening, it's most likely the ALS will take her first. Quality of Life in such a state means everything to a person. But imagine if the daughter made the wrong decision. Imagine if she chose what her mother did NOT want.
These decisions of Quality of Life for the time when the patient can no longer defend nor communicate their wants and needs for themselves leaving the caregiver to make these vital decisions for them. Most likely, the decisions of the caregiver, may not make the decisions that the patient may want at that time in their disease and life. Retaining Quality of Life, while maybe going against Doctor's orders, is an essential part of End of Life care. These decisions and discussions are imperative to have at the time of diagnosis before the disease progresses to a point where the patient cannot make the decisions for themselves as described above.
You need to be an advocate for yourself in Advance so you are not put in this unfortunate circumstance. These conversations need to be brought up to your Doctor, your Therapists, your Lawyers, and anyone else involved in End of Life Decisions to create your Advance Directives. Advance Directives involve many things including whether or not you as the patient want to be put on a feeding tube when the time is necessary. If you are not able to defend yourself or communicate and possibly make the decision for yourself, someone else may make the decision to put you on a feeding tube when you may not want to be on a feeding tube. If you are a patient with ALS for example, it's very possible that if these decisions have not been made at the appropriate time, a feeding tube may be recommended for you since you may have lost the ability to swallow, however, you are fully cognitively aware of what is going on and therefore Quality of Life is diminished.
Advance Directives
Advance directives are written instructions which communicate your wishes about the care and treatment you want to receive if you reach the point where you can no longer speak for yourself. Medicare and Medicaid require that health care facilities that receive payments from them provide patients with written information concerning the right to accept or refuse treatment and to prepare advance directives. Every state now recognizes advance directives, but the laws governing directives vary from state to state.
Probably the most commonly used form of advance directive is the durable power of attorney for health care. A more limited type of advance directive is the living will.
Most advance directives cover life-sustaining treatment such as artificial/tube feeding, mechanical ventilators, resuscitation, defibrillation, antibiotics, dialysis and other invasive procedures.
You can give broad or specific instructions for care providers for each type of circumstance or treatment. For example, you can state that you do not want life-prolonging treatments if you will never recover your physical and mental health to live without constant care and supervision. Or you can state that you want your life prolonged as long as possible. You can address what you wish to occur in the event of trauma, a prolonged state of unconsciousness, a diagnosis of dementia, and so on.
You can also state that you wish to receive only palliative or comfort care. Such care is designed to manage terminal symptoms, including pain. It is important to understand these terms before making decisions about your preferences. Your surrogate should also become informed about the difference between comfort care and life-sustaining treatments. Health professionals and family members may disagree on the nature of a particular treatment. For example, a relative may become alarmed to see that fluids are being administered and think that this will extend life against the patient's wishes. However, the physician might believe fluids are making the dying person more comfortable and are appropriate palliative care. Another example could be the temporary need for a ventilator (mechanical breathing apparatus) and antibiotics following routine surgery.
Pain alleviation or management is among the most controversial end-of-life topics. Because of ethical concerns and the confusion over laws regulating drug addiction, Congress is debating the role of habit-forming and potentially lethal drugs in the management of pain and discomfort at the end of life. Studies have found that addiction among seriously ill people is rarer than once thought. Some individuals, however, fear being over-sedated at the very time when they want and need to recognize and interact with others.
Before making decisions about these treatments they should be discussed with a well-informed health professional. You can also ask what to expect during the last days and hours of your life, and what your surrogate and other loved ones should expect. A good place to start for caregivers, besides talking with a professional is here www.caregiverslibrary.org/
Probably the most commonly used form of advance directive is the durable power of attorney for health care. A more limited type of advance directive is the living will.
Most advance directives cover life-sustaining treatment such as artificial/tube feeding, mechanical ventilators, resuscitation, defibrillation, antibiotics, dialysis and other invasive procedures.
You can give broad or specific instructions for care providers for each type of circumstance or treatment. For example, you can state that you do not want life-prolonging treatments if you will never recover your physical and mental health to live without constant care and supervision. Or you can state that you want your life prolonged as long as possible. You can address what you wish to occur in the event of trauma, a prolonged state of unconsciousness, a diagnosis of dementia, and so on.
You can also state that you wish to receive only palliative or comfort care. Such care is designed to manage terminal symptoms, including pain. It is important to understand these terms before making decisions about your preferences. Your surrogate should also become informed about the difference between comfort care and life-sustaining treatments. Health professionals and family members may disagree on the nature of a particular treatment. For example, a relative may become alarmed to see that fluids are being administered and think that this will extend life against the patient's wishes. However, the physician might believe fluids are making the dying person more comfortable and are appropriate palliative care. Another example could be the temporary need for a ventilator (mechanical breathing apparatus) and antibiotics following routine surgery.
Pain alleviation or management is among the most controversial end-of-life topics. Because of ethical concerns and the confusion over laws regulating drug addiction, Congress is debating the role of habit-forming and potentially lethal drugs in the management of pain and discomfort at the end of life. Studies have found that addiction among seriously ill people is rarer than once thought. Some individuals, however, fear being over-sedated at the very time when they want and need to recognize and interact with others.
Before making decisions about these treatments they should be discussed with a well-informed health professional. You can also ask what to expect during the last days and hours of your life, and what your surrogate and other loved ones should expect. A good place to start for caregivers, besides talking with a professional is here www.caregiverslibrary.org/
Specific Issues to talk about
- Whom do you want to make decisions for you if you are not able to make your own, both on financial matters and health care decisions? The same person may not be right for both.
- What medical treatments and care are acceptable to you? Are there some that you fear?
- Do you wish to be resuscitated if you stop breathing and/or your heart stops?
- Do you want to be hospitalized or stay at home, or somewhere else, if you are seriously or terminally ill?
- How will your care be paid for? Do you have adequate insurance? What might you have overlooked that will be costly at a time when your loved ones are distracted by grieving over your condition or death?
- What actually happens when a person dies? Do you want to know more about what might happen? Will your loved ones be prepared for the decisions they may have to make?
The THREE - 3 important things you need to do when you walk away from this site are 1: Choose a Healthcare Proxy, someone to make these decisions for you should you not be able to, and 2, Fill out your state's - specific Advance Directive to make your choices legal and 3, Make a living will. Below are some documents to assist you with these difficult but important decisions.
National Hospice and Palliative Care Organization
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
Palliative Care Workbook Resources
| palliative_care.pdf |
Workbook for Final Decision Making
- Speak Up: Advance Care Planning Workbook
| acp_workbook__final-colour-web.pdf |
Palliative Care Planning Tips
- Consumer’s Tool Kit for Health Care Advance Planning
| consumer_tool_kit_bk.pdf |