A health care proxy is a legal document that names a representative, or proxy, to make decisions about your medical care should you become unable to make them yourself due to an accident or medical event. This document is an important part of advance care planning and is put in place in case of emergency or incapacitation.
The term may also be applied to the person you place in charge of your medical affairs. In this case, a proxy is a person who sees that your medical wishes are carried out if the time comes when you are unable to communicate them yourself.
Why have a health care proxy?
Without a health care proxy, also called a durable medical power of attorney, there is no guarantee your wishes will be carried out. Unless you have documented how your health care affairs should be handled, even well-meaning family members may not make the decisions you would make for yourself. A clearly drafted legal document takes the guesswork out of decisions, making it easier for your family and medical team.
A health care proxy is different from a standard power of attorney, which allows a designated person to make financial decisions on your behalf. A health care proxy is limited to only medical decisions. It is also not the same as a living will. A living will provides instruction for your medical care in case of incapacitation, but unlike a health care proxy, it does not designate a person to make those decisions.
Your proxy may act on your behalf on a temporary or permanent basis. Your doctor will evaluate your physical and mental status to determine whether you are capable of making your own medical decisions. If you are not able to make these decisions, your proxy will be called upon to start making them on your behalf.
Selecting a proxy
State laws vary on who is eligible to act as a health care proxy. Requirements are dictated by state law but may include the following:
- Must be an adult age 18 or older in most states. Some states require proxies to be at least 19 years of age.
- In most states, you cannot name your current physician, health care team member or employee of a health care facility where you currently reside (unless this person is a family member).
- Some states will not allow a person who is a potential beneficiary of your estate or who is responsible for you financially to act as your health care proxy.
Choosing a proxy is not only a legal matter but a personal one. Consider the following when selecting a proxy:
- Is this a person you can trust?
- Will they advocate for you?
- Does this individual understand your wishes and thoughts concerning your personal health care?
- Is this person able to be present when needed? Do they live nearby?
- Is your proxy knowledgeable about your personal feelings about illness, death, dying and religious beliefs?
- Is this person able to work with family members and deal with conflict and the opinions of others?
- Can they remain calm in stressful situations?
- Are they comfortable communicating with physicians and questioning recommendations?
- It is important to note that you can select a new health care proxy at any time. Simply complete a new durable medical power of attorney form.
Documentation needed
To get started, you need to fill out a health care proxy form for your state. Think about whom you want to ask to act as your proxy and talk with them about the role. Communicate any specific desires you have for your health care needs and determine the extent of power you wish to hand over to them. You may decide to grant only limited power to make specific decisions or give them the ability to make all necessary medical decisions on your behalf.
After selecting a proxy, make sure you give them a signed copy of the form and any medical documents you wish to share. Include contact information for your physicians and other health care providers. Keep in mind, you can select a second, or back-up proxy, in case your proxy is not available. It is also a good idea to share a copy of the form with your primary care physician to hold as part of your medical records.
Duties of a proxy
If you have been asked to act as a health care proxy, it is important to know and understand your role before committing. Once you agree to assume this responsibility, you should clarify your role. The scope of decisions you are allowed to make can range widely, depending on what was included in the health care proxy document. Your duties may include:
- Authorizing medical and surgical treatments, procedures and other medical services on behalf of the individual you are representing.
- Choosing physicians and medical facilities, if necessary.
- Talking with doctors and gathering information to make an informed decision about medical care.
- Making decisions about organ donation, autopsy and disposition of their body after death.
- Accessing medical records.
- Asking for a second medical opinion.
- Collecting personal belongings for the person you are representing.
- Setting aside your own personal preferences to act on those of the person you are representing.
Becoming a proxy means trying your best to do what you think the person you are representing would want. As a health care proxy you will have full access to medical information, but it is important to note that being a health care proxy does not mean you have any financial responsibility for medical bills or other expenses incurred.
If you are not comfortable with this role or have any reason you do not think you could carry out the necessary responsibilities, you should decline. Simply thank the person for asking and explain why the role is not a good fit for you.
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What is dysphagia?
Like aphasia, it can be caused by neurological conditions such as brain injuries and stroke, but it also can stem from muscle disorders, certain cancers and blockages/strictures in the throat.
Depending on the cause, dysphagia can be temporary or long-term.
Conditions commonly associated with dysphagia include:
- Parkinson’s disease and multiple sclerosis
- Neck and throat cancers
- Late-stage Alzheimer’s disease and other dementias
- Cervical neck surgeries
Stages of dysphagia
There are three phases of swallowing that are impacted with dysphagia:
- Oral: This is the process of chewing food and mixing it with saliva to form a bolus in order for it to be moved from the front of the mouth to the back of the mouth. A person with dysphagia in this phase could have trouble breaking down the food enough to properly move it to the back of the mouth to trigger the swallowing reflex. This stage is also where tongue weakness or decreased sensation may impact the ability to clear food from the sides of the mouth causing it to pocket in the cheeks.
- Pharyngeal: This is where the swallowing reflex begins, and pharyngeal muscles push food down the throat to the esophagus. The epiglottis (a cartilage) inverts to protect the airway and sends the bolus towards the esophagus. This is when the upper esophageal sphincter opens to allow food to travel into the esophagus. A person with dysphagia in this phase might feel like the food is “entering the wrong pipe,” Delashaw said, because the muscles in the pharynx and/or larynx are not operating properly to prevent food or liquids from entering the airway.
- Esophageal: This is when the bolus is taken from the upper esophageal sphincter that has opened, allowing it to enter the esophagus. Peristalsis (muscle contractions) carries the bolus from the upper esophagus towards the stomach. In this phase, a person with dysphagia may feel like food is stuck in their throat or chest.
Symptoms of dysphagia
Dysphagia symptoms could include:
- Coughing or choking during or shortly after eating or drinking
- Heartburn or indigestion
- Feeling that food is stuck in the throat or chest
- Painful swallowing
- Regurgitation
- Food sitting in the mouth or being pocketed in the cheeks
- Unexplained weight loss
- Reduced desire to eat
Diagnosing dysphagia
Dysphagia is diagnosed by a healthcare provider. Speech-language pathologists diagnose dysphagia with a comprehensive oral exam and swallowing examination, which should include swallowing tests such as a FEES or MBS exam.
- FEES: FEES stands for fiberoptic endoscopic evaluation of swallowing. This is an exam where a speech-language pathologist inserts a small thin scope with a camera through the nose and allows visualization of the throat, larynx and vocal cords to assess swallow function as you eat and drink certain foods.
- MBS: During a modified barium swallow study, a speech-language pathologist will give you food and liquids covered in a small amount of barium. As you swallow, X-rays are performed to view your swallow in real-time.
Treatment of dysphagia
After a dysphagia diagnosis, a speech-language pathologist can help determine what consistency of food and liquids is safest to eliminate risk of choking or aspiration. They can also provide therapy and exercises to help strengthen the muscles used during the different stages of swallowing.
Treatment should always involve a discussion with the individual to determine their wishes regarding oral intake and development of dysphagia treatment.
“If difficulty is noted in the oral phase, we can design an exercise program to target movement for the muscles used when breaking down the food,” Delashaw said. “Say you had a stroke that impacted lip muscles, and you can’t hold food in your mouth. We’re going to work on increasing the control and strength of the lip muscles, so you do not lose liquids or foods out of the mouth.”
In addition to exercises, Delashaw said neuromuscular electrical stimulation could also be used to increase muscle awareness in the different stages of dysphagia.
In the esophageal stage, your speech-language pathologist could suggest obtaining a referral from your primary care doctor to a gastroenterologist for further evaluation.
Recovery from dysphagia
Depending on the diagnosis and related conditions, dysphagia could improve over time. If swallowing difficulty is related to a neurological condition, inpatient rehabilitation could help develop adaptive techniques and diet plans to meet your needs and quality of life standards.
The multidisciplinary approach in this setting also allows for other symptoms related to your condition to be addressed through intensive therapy. In addition to working with a speech-language pathologist, your therapy team would also include a physical therapist and occupational therapist to address mobility and strength as well as activities of daily living and quality of life.