|Medical and legal records 
Guardianship of children 
Power of attorney 
Advance directives and living wills 
Wills and estate planning 
Keep complete, detailed records of all medical events in the life of the person with ALS, including appointments, medications, treatments, tests, equipment and hospitalizations. This personal health record also should include names and contact information of the ALS clinic coordinator, nurse and doctor, insurance ID numbers, blood type, a list of medications and equipment, whom to call in an emergency, special care issues and other relevant documents. This will be helpful in speaking with new medical personnel, hired caregivers, hospital staff and insurance representatives. Bring this record along when your loved one has to go to the emergency room.
It's also good to have all important legal papers related to your loved one's care in one place for easy access. A notebook or box could contain: insurance policies, living will, DNR orders, will, names and contact information for doctors, property deeds and other legal documents. In addition, it could include a list of people to be contacted at various times in the disease, where to find other important papers and anything else related to final wishes (see Chapter 9 ).
Put original legal documents in a safe deposit box. Keep a set of copies in a handy file to take to the hospital or emergency room, and another to take in case of emergency or natural disaster (see Emergency Preparation ).
|"I organized my papers with a small group of trusted friends. It sounds like a lot of stuff to put together but we did it, had our little meeting to talk things out. Everyone felt good after that meeting that they know exactly what to do whenever something might happen. I feel more at ease, too, that I know everything has been made easy for those I leave to deal with things when I can't do them for myself."|
ALS brings to the foreground many issues that most of us put off dealing with. Sometime early in the disease, the person with ALS and the family caregiver should begin to plan for later stages of ALS and issues that will be important after death. It's helpful to start early sorting out the financial and insurance questions covered in this chapter. Although absolute decisions don' t have to be made about late-stage care, a discussion should begin; it will become harder to talk about when your loved one's speech becomes affected by ALS.
One couple sent their children out for the evening with money for pizza and a movie. Together the two went over all the financial and legal decisions and information they needed to deal with. They grieved and cried at the thoughts these discussions brought up, but afterwards, having the paperwork done and the ordeal behind them allowed them to focus on day-to-day caregiving issues with greater confidence and calmness.
One early decision is when to transfer titles for property into the spouse's or other relative's name, rather than continuing joint ownership. This will simplify applying for government benefits, collecting insurance benefits and dealing with probate. Be sure safe deposit boxes can be accessed by the surviving caregiver alone.
Always consult an attorney or financial adviser to be sure you understand all the choices and implications; it will cost more upfront but can save thousands of dollars in the long run.
Disability at the Dawn of the 21st Century and the State of the States , ed. by David Braddock, AAMR , 2002
American Bar Association . Consumer guide to finding free legal help (by state). Also check with county bar association.
Elder Law Answers , (866) 267-0947
LawHelp . List of free legal aid programs by state for low - and mid-income individuals.
National Academy of Elder Law Attorneys , (520) 881-4005
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Custody of minor children is usually awarded to the other parent or nearest relative. A single parent with ALS who wants someone else to take custody should get the legal documentation completed.
It's also wise to set up trusts or life insurance for later support of the children. Look into special needs trusts if a child has a disability.
A durable power of attorney for health care confers on a close relative or friend the legal power to make medical decisions in the event the person with ALS becomes unable to communicate wishes. A general power of attorney can grant someone the authority to make legal, financial and other decisions for the person with ALS. These documents are available at most hospitals, from attorneys, in public libraries and online.
When people with ALS can no longer sign their names, caregivers can do it for them. For official documents such as tax returns or property deeds, a power of attorney form is needed in order to sign for a loved one.
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"It's important to have an attorney who specializes in Medicare, Medicaid and your state programs review your decisions. They can help you avoid pitfalls. It's important to have second and third choices for power of attorney, executors, and guardians for children in case your first choice can't do the job when the time comes. Your main caregiver may be too burned out after your passing to take on being executor, for example."
"I can't stress too much how helpful it was that we had our discussions before a crisis and that we listened to one another rather than what a bunch of preprinted attorney forms indicated was best."
"We made a 4x6 card for [my husband] that included his name, date of birth and photo. We wrote wife's, best friend's and doctor's phone numbers. Disability: ALS 'Lou Gehrig's Disease.' In red we wrote: 'No chemical or mechanical resuscitation. No intubation or ventilation, nasal canula, O2 only. Heimlich or cricothyrotomy only for temporary obstruction.' We then had it signed by his physician, notarized and laminated. There were copies in the van, wheelchair, friend's wallet, purse, etc. The EMS system was also made aware."
"[My husband] had a living will, giving me medical power of attorney when he could no longer make decisions. He did stipulate in writing how far he wished his care to go, which was notarized and witnessed by our attorney. This also protected me from prying family members who didn't like his course of treatment. His wishes were clear, concise and followed to the letter."
As ALS progresses, it will be necessary to discuss your loved one's wishes regarding advanced medical intervention. When ready, make these wishes formal in a living will and a durable power of attorney. The person may wish to stop ventilatory support when quality of life seems too poor to continue. The person still can receive palliative care at home, in the hospital or in a hospice setting, which alleviates symptoms and maintains comfort. As difficult as it is to discuss such things, it's better to have wishes out in the open while the person is able to communicate; be sure to inform the health care team of the decision. (See Stopping Ventilatory Support .)
A living will (or medical directive or health care proxy) specifies exactly what types of advanced medical intervention a person with ALS does and doesn't want, should a medical emergency arise or should the person become permanently unconscious. It also can state the person's wishes in case of advanced dementia or other specific crises. These may involve decisions about invasive ventilation or resuscitation. Once a living will is signed, it can always be changed, or overridden by the person with ALS. Having it in place eases family members' uncertainties about unwanted medical intrusions.
While all those close to the person may want to express their wishes, the fact is that interventions or lack of them are ultimately up to the person with ALS (see Chapter 9 ). He or she should make sure that at least one close loved one knows exactly what they want and has power of attorney.
Five Wishes to Make in Advance , MDA/ALS Newsmagazine, June 2005
Stay in Control by Making Advance Directives , MDA/ALS Newsmagazine, April 2004
Plan Ahead for Disability with a Power of Attorney , MDA/ALS Newsmagazine, March 2004
"Five Wishes Living Will" document, Aging with Dignity , (888) 594-7437
Caring Connections . Helpline (800) 658-8898. Advance care planning, caregiving, hospice and palliative care, pain, grief and loss, and financial issues. Advanced Directives for all states.
Get Palliative Care . Includes a palliative care provider directory, a detailed description of palliative care, direct links to palliative care-related organizations and more.
Also see Chapter 8: Hospice .
Most people feel very strongly that they want to have some control over the manner of their deaths, if possible. A living will can include specific instructions about DNR (do not resuscitate) orders. These should explain what the medical condition is, and whether the person can speak, can breathe independently, has a feeding tube, and the location of other instructions. DNR details must fit the requirements of the state of residence. Check to see whether a doctor's signature and/or notarization are required.
A living will or DNR should be very specific. It may have to be read in the hospital, or by emergency personnel coming to the home, usually in a time of crisis when everyone is upset. Generally, "being DNR" means not having any heroic, major interventions done; the hospital still will give comfort care which consists of oxygen, morphine and food. Be specific about what "heroic interventions" and comfort care are requested, and which are forbidden.
Among the life-sustaining procedures that may be applied are:
If the living will doesn't state a preference about food or oxygen, the family can speak to the doctors about what they believe their loved one would have wanted. Doctors often will heed family members" wishes. But if there's disagreement among family members, medical staff will side with intervention. That's why the patient's wishes should be stated in a legal DNR.
On the other hand, emergency medical personnel may not be allowed to honor a "verbal DNR" from a family member. Valid, signed documentation should be produced when the paramedics arrive. In case of confusion, the patient can have a pendant or Medic Alert bracelet attached to clothing that states DNR terms or asks for CPR (be sure the state considers these valid). Some EMTs are trained to look on the refrigerator for a packet containing health history, meds and advance directives, or a notice of where to find these things. If instructions aren't clear and immediately visible, EMTs will do whatever they can to save the patient.
As long as the person with ALS can express wishes verbally, he or she can request that machines be turned off. But usually when this crisis stage is reached, the person is unable to speak or write. A living will can state under what circumstances the person wants lifesaving equipment turned off.
At the Close of Day: A Person-Centered Guidebook on End-of-Life Care, by Lance Davis, M.D., and Albert Keller, D.Min., Streamline, 2005
Caring Connections , Helpline (800) 658-8898
Family Doctor.org , Advance directives and DNR orders. Information site produced by the American Academy of Family Physicians.
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by Lawrence H. Phillips II, M.D.
Recognizing that respiratory failure and/or inability to take in adequate nutrition is frequently the cause of death in cases of ALS, I hereby wish to state in advance my preference regarding invasive mechanical ventilation and feeding gastrostomy tube placement. It is my desire that these preferences guide the decision making of my family and my physician(s) in the event that I am unable to participate in a meaningful way in discussions regarding my health care. I understand that none of the choices made here will be put into effect without my
agreement as long as I retain the capacity for decision making and the ability to communicate, in some form, those decisions.
(Choose one of the following three main options):
If invasive mechanical ventilation is used and it becomes evident that long-term mechanical ventilation is required, then (choose none, one, or more of the following):
(Choose one of the following two main options):
In all cases where I choose not to start or to discontinue mechanical ventilation or nutrition via gastrostomy tube, I instruct my physician to provide me with adequate medication to relieve anxiety and discomfort that may occur during the final course of my disease.
(Used with permission of the Journal of Clinical Neuromuscular Disease . 3(3):116-121, March 2002)