Live and Learn: ALS and Health Care Power of Attorney

A strong health care power of attorney is indeed powerful for a condition like Alzheimer’s. But it may come as a surprise to learn that a good “basic” advance-directive document needs considerable supplementation when it comes to a dreadful illness like ALS – Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease.

Ordinarily, if a patient becomes unable to communicate their health-care choices, a good advance directive gives the patient’s agent a lot of power to shape the health-care plan as the patient would want: The power to keep the patient at home if possible; or, if not, to select a long-term health-care facility; to authorize pain-relieving drugs; to accept or decline surgery as the patient would wish; and to accept or reject blood transfusions, dialysis, antibiotics, cardiopulmonary resuscitation, breathing and feeding tubes – and possibly to decide when all that treatment should stop and the patient be allowed to die a natural death.

Many, if not most or all, of us would decline mechanical devices like breathing and feeding tubes, if that aggressive treatment would merely prolong the dying process. Yet people suffering with ALS might benefit from temporary use of precisely those treatments, as long as the treatment is accompanied by education and support in a conservative treatment plan specifically crafted for their condition.

ALS patients must be supported by care that is centered on creating more autonomy and the ability to communicate. There are conservative treatments available to assist in the breathing and coughing problems that ALS patients need assistance with, to avoid lung complications and preserve quality of life for as long as possible. These conservative treatments should be used before the drastic choice of tracheostomy, which could condemn the patient to institutionalization for the rest of that person’s life. With less-drastic treatment, the patient might remain at home and preserve a measure of familiar comfort and autonomy.

Likewise, education must be offered to create the ability to communicate by means other than speech. This education, if done timely while the patient still has some ability to move, could ensure that he or she remains communicative even when speech is eventually lost. This would avoid the terribly lonely, frightening, and despair-inducing “locked-in” condition, in which the patient retains all his or her cognitive faculties but is helpless to communicate at all.

A wonderfully supportive resource is a Caregiver’s Guide provided by the Muscular Dystrophy Association, available here.’s_Guide_P-531.pdf

It’s loaded with information about ALS symptoms and side-symptoms; respiratory, nutritional, and emotional issues; simple solutions to build the communication skills crucial to avoiding “locking in”; financial and legal issues; end-of-life issues; and many other educational resources.

For a brief video about conservative therapies to assist with breathing and coughing, published by the Rutgers New Jersey Medical School, see here.

A health care power of attorney document that is custom-drafted for ALS patients should also specify that the patient must be consulted every six months to review the patient’s condition and how it may affect the patient’s health-care choices. The patient’s wishes can change, depending on the person’s progress.

Knowledge is power, and health care power of attorney documents for ALS patients should ideally reflect the education that is so important to preserve those peoples’ quality of life for as long as possible.

A Power of Attorney Protects Your Right to Vote

Your right to vote is a fundamental lynch-pin of what it means to be a citizen – yet you could lose your right if you become a ward in a guardianship. Having a strong power of attorney is essential to avoid that drastic, but little-known, consequence.

A power of attorney gives a trusted person the authority to act on your behalf. Support like that is especially important if there is any question that you might have become unable to make decisions for yourself. Sometimes, however, that situation is far from clear. Elderly people can be dragged into unnecessary guardianship proceedings not of their choice.

This can happen, for example, if you are temporarily hospitalized and a not-so-friendly person – maybe related to you by a second marriage – sees an opportunity to seize control of your finances. Any adult person can file a petition seeking a guardianship. If you had designated your trusted agent before hospitalization, your agent could defend against that kind of predatory danger.

The danger is real. You could lose not only your money and your independence, but also your right to vote. For example, until relatively recently a provision in the Arkansas Constitution stated that “no idiot or insane person shall be entitled to the privileges of an elector.” That provision had the force of law until 2009. And again in Arkansas, once a person is placed in a guardianship, court approval is required before the ward is permitted to vote. Laws like these are by no means exceptional. Many states disqualify from voting persons who have been adjudicated incompetent, incapacitated, or of “unsound mind.”

But the standard to decide whose mind is “unsound” is far from clear. For example, a diagnosis of dementia can encompass a wildly variable population, depending on the point of view of the evaluating professional. And judges usually have no specialized education of their own in psychology.

Whether a person can handle their finances, or retains the ability to drive, are far different questions from whether a person retains enough sense to vote. A citizen who votes for any winning candidate joins the majority of the electorate. Determining, in advance, that one vote of all those is irrational discriminates against that particular voter – when many uninformed voters, who might choose candidates based on the brilliance of their smile, say, would not be subjected to that kind of scrutiny.

How much better it would be, then, to avoid that battle in the first place. With the help of an elder law attorney, you can create an effective power of attorney that will do just this. Give us a call – we would be happy to help!

Is Your Durable Power of Attorney Designed to Do What You Need It To?

It is an unfortunate circumstance that many people often do not establish an estate plan until it is too late. Whether you are eighteen or eighty, do not be fooled into thinking that this is something that can wait. Creating an estate plan that fits your unique needs will provide you and your loved ones with peace of mind that your affairs will be well taken care of in the event you become incapacitated, either temporarily or permanently.

Further, do not wait until the first signs of illness or mental incapacity occur. In this instance, it may be too late. One estate planning option, a durable power of attorney, allows you to outline your wants and needs at any age. By making the power of attorney “durable,” the provisions you previously established remain in effect in the event you become unable to make decisions for yourself.

Let us share some of the benefits of establishing a durable power of attorney, so you are better informed about the planning options available to you.

1. You retain control over the document until you are unable to make decisions.

A primary component of creating a durable power of attorney is the power it gives you to designate an agent. You, as the creator, have complete control over who you choose to appoint as your agent and the authority you want him or her to have when it comes to making decisions on your behalf. Some of these responsibilities can include opening your mail, having access to all of your accounts, and even creating an emergency estate plan for you, if necessary. Be sure to choose someone you trust implicitly with each of these responsibilities.

2. You may enjoy a level of asset protection.

As with most estate planning options, a durable power of attorney can provide a level of protection for your assets. By discussing your durable power of attorney document with an experienced estate planning and elder law attorney, you can try to protect your property from reaching the hands of creditors. This can include planning tools that can help you avoid long-term care creditors should you need assistance later in life from a skilled nursing home or assisted living facility. Your attorney can also ensure your document adheres to state execution requirements that you may not be aware of.

3. You can outline your wishes and help alleviate the stress of your loved ones.

If certain responsibilities are left undesignated or unaddressed through your durable power of attorney document, your loved ones may be forced to turn to the court to seek authority to act for you. This proceeding of guardianship and conservatorship can be long and expensive, and will put your loved ones through unnecessary stress. At the end of this process, the court may appoint a person or entity to handle your affairs. You can avoid this stress and retain some control by creating your durable power of attorney. Through this document you can ensure your wishes are organized and clearly laid out, and you have designated an agent of your choice. This will help your loved ones have peace of mind that your affairs are being handled in a way you would be comfortable with.

These are just a few of the advantages of setting up a durable power of attorney. Do you have questions? Do not wait to contact our local legal team. We are the estate planning attorneys here to help you.

Make Sure Your Wishes Are Carried Out

The importance of making end of life preparations cannot be stressed enough. Many put off making these plans thinking there is always time. The sad reality is that none of us are guaranteed time. Others may be bothered by the thought of death itself and allow this to paralyze them when it comes to making plans and getting their affairs in order for the end of life. However, most of these same people have wishes and thoughts about where and to whom their assets are distributed. Many of them also have ideas about what they do and do not wish to have happen when their life ends. Lack of preparation and planning means that these wishes likely will not be honored. In addition, it causes additional strain and stress on the people who are left to sort out the affairs. An example of this is the story of Debbie.

Debbie was a teacher who had been retired for several years. She was aging alone. She never married and had no family around. She did have a small circle of friends. After retirement, Debbie’s health progressively declined and she had more and more difficulty caring for herself. After a few years, Debbie passed away in her home.

Previously, she had conversations with a handful of her friends telling them her wishes for the possessions and assets she had. Because of these conversations, these friends each thought she had made the proper preparations to ensure these wishes would be followed. Unfortunately, Debbie had none of the necessary end of life documents that would allow her wishes to be followed. Her friends were left to try to piece together a puzzle that only many missing pieces. Her burial was prolonged and what she did have after paying expenses to settle the estate and bury her will not end up where Debbie wanted. This scenario can, however, be avoided.

If you or your elderly loved one have not made end of life preparations, make time to do so as quickly as possible. An elder law attorney can help guide you in what you should be doing, and can make sure the proper documents are in place to carry out your wishes regarding your health, care you want (or don’t want) to receive, and who should receive your money and possessions.

The first key document to be sure you have is a will or a living trust. A will allows you to specify where your money and possessions should go upon your passing. It also allows you to choose an executor of the estate. The executor will take care of managing the estate, paying debts, and distributing property as specified. A will only takes effect upon your death.

A living trust does everything a will can do, but also allows for you to choose someone to manage your assets if you become incapacitated because it is effective during your lifetime. A living trust also provides privacy, as it is not subject to court proceedings that become open to the public like a will is. There are numerous other advantages to a living trust that can be explored with the help of an attorney.

A living will and health care power of attorney are two additional documents that take effect while you are alive. A living will specifies your wishes for end-of-life medical care. For example, you can specify whether you want to be kept alive by artificial means if you are in a terminal state. A health care power of attorney provides for someone to make health care decisions for you, in case you aren’t able to make decisions yourself.  Both of these documents outline your wishes about medical treatment and care when you can’t make them for yourself, so it’s important to seek legal guidance to make sure these documents are drafted properly.

A financial power of attorney should be in the plan as well. A financial power of attorney names an agent to handle your finances in the event you are no longer able to.  An agent can open and close bank accounts, write checks, and sell property if you choose to allow them the authority to do so. Like the health care power of attorney, the financial power of attorney should be created with legal advice to make sure your wishes regarding your finances are properly documented.

Having an estate plan is necessary for you to have a say in what happens if you become sick and cannot make decisions for yourself, and to determine what happens with your money and your belongings after death. An estate plan also helps those who are left to deal with the estate to do so in a more simple and straightforward manner.

If you have any questions about something you have read or would like additional information, please feel free to contact us.

Spoon-feeding and Hydration: What are Your Wishes?

By now, many of us have witnessed the slow and dehumanizing death by Alzheimer’s of friends and loved ones. In the final stages of this and other dementia diseases, there comes a time when the person can no longer speak, recognize loved ones, or move purposefully.

With that poor quality of life, many would choose to stop hand-feeding and hydration, and to allow the dying process to begin. However, long before that time arrives, the person in question has lost the capacity to make and to express that decision. If the person no longer has an effective way to be heard, institutions where such people are usually confined are legally and morally obligated to continue hand-feeding and hydration until the bitter end.

That end can come years and years later. A terrible characteristic of such diseases is that people may have lost all that made them whom they once were and, yet, they remain physically healthy enough to continue, in that absent state, for many years.

Existing health-care powers of attorney usually only rule out artificial nutrition and hydration, like feeding tubes and IV. Until recently, the documents did not include hand-feeding. Thus, despite the person’s health-care agent requesting otherwise, caregivers would be required to continue cajoling, persuading, and insisting that the person continue to be fed by hand. This process would rely on a primitive reflex in which touching the spoon to the corner of the person’s mouth would result in an involuntary opening of the mouth. This could be misinterpreted as a desire to eat, and the sad situation could drag on and on without any way to intervene.

In especially tragic cases, where the person’s swallowing reflex has become diminished, the person could aspirate food and fluid into the lungs, resulting in pneumonia.

Thanks to pioneering efforts by End of Life Washington, and End of Life Choices in New York, a new document has emerged to supplement existing health-care directives and to specifically address this issue. Where the person has become unable to feed herself, can no longer use the toilet, and can no longer move or speak or recognize loved ones, the person may have expressed, in this supplemental document, that hand-feeding be stopped – or that feeding be restricted only to foods that the person demonstrably enjoys. The document further requests that the person be kept comfortable and out of pain through careful medication and other measures to relieve any anxiety, agitation, or insomnia.

Especially when the dementia diagnosis is first made, and while the person still has the capacity to make and communicate health-care decisions, this supplemental health-care directive must be considered. Creating a video expressing these wishes is also a very good idea. That way, at a time when the person has become only a silent immobile presence in bed, caregivers can see the person as he or she used to be, expressing wishes while the person was still able to communicate them.

Please give us a call if you would like to talk about your wishes and how to create a legal document reflecting those wishes.


Practice Areas