Directives, Quinlan, & Schaivo

January 5, 2008 Kyron No Comments

Back in November my Katherine turned 16. Sweet 16. A bittersweet moment for me. I admit it, sometimes it is still rough to know what won’t be. Regardless she is still a beautiful, precious child. As the years have passed and her limitations have become more clear, planning for her future and researching options that will be needed to protect her have taken more of my time and sometimes bring on some level of melancholy. I tend to think of myself as an optimist on an overall basis but I’ve had to force myself to work at worst case scenarios so that I could protect and provide for her now and so that I can put things in place to protect and provide for her when I’m gone. This means making sure I have relevant documents in place for me and updated on a regular basis so that Katherine never has to be confronted with these decisions directly in adulthood.

I know lots of people don’t talk about the issues I’m going to write about today – not unless it is water cooler talk about something in the news at the office (Think Terri Schiavo). I didn’t grow up like that however. My family had discussions on a regular basis because of this case (and the Quinlan case mentioned below) and real life illnesses in my family enumerating how each of us would want care to be continued or ended in a variety of different scenarios. The knowledge became crucial when my mother was who was being treated for cancer suddenly deteriorated. The shock of that phone call from the hospital early one morning is something I’ll never forget. I had no idea my mother’s illness was that advanced. I thought we still had time. The fact that I knew what her wishes were and I could practically repeat them word for word helped for two reasons. One, the shock I was in made it almost impossible for me to talk, let alone think. Just as importantly, it allowed me to act based on my mother’s wishes, not on a 20 year old daughter’s desire to have more time no matter the quality of that time or the cost to my mother. It would have been selfish, and I know it. I also know because of those conversations, I was able to do the right thing.

Today I said I was going to talk about Living Wills and Healthcare Power of Attorney. Not entirely true – what I’m really going to talk about is what is frequently referred to Advanced Directives. Advanced Directives came into being after Karen Ann Quinlan, a young woman from New Jersey fell into a coma and persistent vegetative state and her parents sued the hospital she was in for refusing to remove life support measures at their request. A national debate as well as landmark legal action ensued. This case is widely considered to have sparked the birth of bioethics….but I digress.

Basically, Advanced Directives are a grouping of documents that exist to give guidance to family members and healthcare professionals (and the courts if that should ever become necessary) on your wishes for medical treatment and life-sustaining measures at a time when you can not express these wishes yourself because of illness or injury. There are different kinds of directives and each state carries their own laws regarding both what they are called and what powers and controls they can give so you’d do well to discuss specifics with your personal legal representative.

Here’s what I can tell you from my personal experience and research.

Living Wills

As I stated above, it basically outlines what medical treatment and life-sustaining measures you would want to have taken at a time when you can not express these wishes yourself. This can mean anything from respirators to feeding tubes to resuscitation (CPR). Obviously it’s not going to be able to cover every possible scenario which is why there’s also the…

Healthcare Power of Attorney (POA).

This also goes by many different names (Medical POA, Health Care Agent or Proxy, Durable POA for Health Care….) Whatever it’s called it’s a document which allows an individual to designate a person (sometimes referred to as a proxy or agent) to make medical decisions on their behalf in the event they are incapacitated. The information in these two documents act together as a guideline for the individual appointed but will need to be interpreted by that individual so the choice should be given some thought. It’s a rough thing to make decisions that can mean life or death for a loved one, even if you know it’s the right thing to do and that you are following their wishes. If you were not to have this document the decisions about your care would default to a spouse, or if you are not legally married, to an adult child or parent.

Do Not Resuscitate (DNR) Orders

This is a legal document that requests that the CPR not be performed if your heart stops or you stop breathing.

Psychiatric Advance Directive

(info provided thanks to National Resource Center on Psychiatric Advance Directives)

This is a fairly new document and is not recognized in all states (actually only 25 at this time). It gives the person with a psychiatric condition the ability to give information during stable periods that can be used to assist in treatment during a crisis when they are incapable of acting on their own behalf. As outlined on the NRC-PAD site the following information would be contained in a Psychiatric Advance Directive.

  • Crisis symptoms -what the individual looks like during a psychiatric crisis. This information can help medical personnel better recognize the symptoms that might not look psychiatric for what they are.
  • Medication choice – the individual can specify medications they would want to take or would refuse. The individual can use this document to give rationale for these choices as well as indicate side effects or allergic reactions they may have had with previous use of certain medications.
  • Hospital choice – choice of hospitals the individual would like to use and reasoning for the choices. These choices can be limited by insurance plans as well as bed availability. The rationale for the choices being made can also be given such as being close to home for familial support.
  • Emergency contacts – family, friends, medical professionals, counsellors that should be contacted in the event of a crisis. This will facilitate communication between the patient and treating personnel.
  • Relapse factors – alerts inpatient staff to factors in the community that contribute to relapse which should be considered in discharge planning. This information can also give insight to the treating professionals of the patients level of understanding for their own illness.
  • Protective factors – This section can document the individuals view about what aspects of treatment are helpful and issues that should be taken into consideration in treatment and discharge planning. This can include items such as outpatient services that the patient feels buffers against relapse.
  • Instructions to clinical staff – This can give the individual the ability to tell the staff treating them how they would like to be treated. This can include advance instructions for staff to avoid restraint and seclusion as well as known issues related to the ways patient has difficulty coping in the hospital setting.
  • Other information that can be included may include preferences about ECT, other medical conditions (seizure disorders, diabetes, asthma, etc), other medications the individual may take on a daily or as needed basis and food allergies.

A lot of information to take in…I know. How do these play a part of being the parent of a special needs child? Certainly personal experience dictates to me I need to have a Living will and Healthcare Power of Attorney in place as a responsible parent. For Katherine’s personal situation, I doubt we’ll have to do most of these documents for her. The likelihood is that we will have to utilize guardianship (a topic we’ll cover at another time) which would give us control over medical as well as financial decisions for her. However, I will work with her as she reaches the age of majority on her psychiatric advance directives. This will give her the ability to voice her wants and needs and give me some guidance during a difficult time. I will appreciate having the ability to advocate for her wishes and needs as she sees it.

I know many parents who will need to face an even more difficult task – putting these documents in place for their children. There are special parents among us who have children with special needs that are life limiting. Cystic Fibrosis, Cancers, heart disease, HIV-AIDS, Muscular Dystrophy, so many devastating diseases whose parents will need to have the discussion with their older children and adult children and allowing them to put a living will, healthcare power of attorney and possibly even a DNR order.

Hopefully by knowing about these documents and the ways in which they are meant to assist you or your loved one, you find comfort in knowing you are doing the best you can to assist and protect your special one.

Tomorrow – Durable Power of Attorney

(This is the second in a series of articles that The Special Parent is doing on legal documents you should make sure you have to protect you and your special needs child. The information contained within this series is for general informational purposes only and is strictly the opinion of the author who is not a legal practitioner. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative.)

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