advance directives = Legal and specific instructions that you prepare ahead of time to tell others of your wishes regarding your
medical care in the event that you are unable to do so. This may also include financial decisions.
Examples of Advance Directive’s = code status, DPOA or guardianship documents, living will, living trust, organ donor information,
desire for cremation, autopsy request, restrictions for feeding, medications, hospitalization, ventilators.
The issues that come up with Advance directives are many. Emotional issues, financial issues, ethical issues, the list goes on and on.
Most people never even think about preparing AD’s until they are older. This can be a big mistake. AD’s should always be made
while you are in a healthy state of mind. If you wait too long, family members or a court appointed guardian may make these
decisions for you. AD’s can be put into place whether or not you live in a long term care setting or in your own home.
Glossary of common AD’s in LTC
Guardianship – A guardian is a person appointed by a judge to serve the needs of a person declared mentally incompetent.
DPOA – Durable Power of Attorney. A person designated to make decisions on your behalf in the event that you are unable to ie.
unconscious. Most commonly this is a family member.
Living will – Definition varies from state to state. Typically a living will is your declaration stating what procedures you prefer and
don’t prefer near the end of your life. Care and comfort vs. life sustaining measures for example. This may include restrictions on
medications, hospitalization, feeding tubes, etc.
Code Status – If you wish to avoid CPR in the event you suffer cardiac arrest, you would sign a document declaring that you are
“DNR” or Do Not Resuscitate. If you do not create such a document, you are automatically considered a “full-code” and in the
event of cardiac arrest, all measures will be performed to resuscitate.
FAQ regarding Advance Directives in the nursing home
- What if I put Advance Directive’s in place and then I change my mind? What should I do? First, notify a social worker or
your physician. Tell them your new wishes and that you want a Doctor’s order written in your medical record indicating the change.
Don’t delay, make sure it happens that day, don’t except excuses or tricks. The physician is available either in person or by phone
24/7. If you were vomiting blue and pink fluid, don’t you think the Nurse would get a hold of the physician right away! Of course
they would if they wanted to. Don’t ever let a staff member tell you they can’t get the order because the Doctor is unavailable. Step
2, notify your family or loved ones of the change. They are your biggest advocate and they need to know. You may even want to
consult with them first. Step 3, have your changes put in writing. You or your family will need to draw up new documents just like
the originals. This may take several days.
- Can I change my mind regarding my Advance Directive’s in the middle of an emergency? I have seen this happen and it
can get ugly. The simple answer is yes you can. You are conscious and able to make decisions. For example, you wake up in the
middle of the night and have a terrible head ache and you feel weak on one side. You feel you may be having a stroke. Then you
realize that your AD’s state “no hospitalization – treat at nursing home only”. Yikes, what do I do! Easy, tell the nurse your symptoms
and that you demand to be sent to the hospital for evaluation of a possible stroke. You are not a child; you have the right to override
your AD’s. Any good Nurse would be a fool not to send you out. Stick to your guns if you encounter an incompetent staff member
(there are a few out there). The only time this can get weird is if you have a guardian. A guardian is basically a person who can make
decisions for you even if you are conscious. I would hope that if you told your guardian what you wanted, that they would agree and
approve any treatment. Unfortunately, I have personally witnessed guardians refusing treatment and/or hospitalization for residents
that needed it, emergencies and non-emergencies alike. It is very likely that any major decisions that the staff need to make, they will
run it by the guardian first and not you. In my experience, guardianship is used rarely, having a DPOA will usually suffice in most
situations.
- Can I change my mind regarding my loved one’s Advance Directive’s in the middle of an emergency? (see also, Can I
change my mind regarding my AD’s in the middle of an emergency?) Again, the simple answer is yes with a few exceptions. If you
are someone’s DPOA, you are the final authority, not a piece of paper. The paper that states the wishes of the resident is available
to the staff in the event that you are not available and/or the resident is unconscious. It is a guide, not a federal law. A good staff
member will try to call the DPOA in an emergency to verify your wishes. If you are unavailable and the resident is unconscious, then
the staff will follow what is written. If you are available, either by phone or in person, then you make the decisions. For example, you
are the DPOA of your mother. Her AD’s state among other things, “no antibiotics”. You receive a call from the nursing home and
are told that your mom has just been diagnosed with pneumonia. She is very sick but the doctor is waiting to hear from you before
prescribing an antibiotic. You are told that with out the medicine, there is a good chance she will not survive. In this example, your
mom has severe Alzheimer’s disease and cannot make decisions for herself. You tell the staff, “go ahead and treat her this time with
antibiotics.”
- What does “DNR” mean? DNR is an acronym that stands for “Do Not Resuscitate.” In other words, “do not perform CPR
(cardio pulmonary resuscitation) in the event of cardiac arrest. This is also described as “no heroic measures”, “no code” and “letting
life take it’s course” or “dying with dignity”. If you choose to be classified as DNR, you (or your representative) will need to sign a
document that is witnessed by two people indicating your wishes. Each state may have different requirements. Some emergency
responders will not accept a physicians order only for DNR and may require a specific, witnessed document.
- Can I specify “temporary feeding tube but not permanent”? Feeding restrictions are something that most people neglect to
mention when preparing AD’s. Yes, you can specify “temporary tube feeding only” or “No tube feeding”. A temporary tube feeding
is a very thin tube, similar to IV medication tubing that is placed into the stomach via the nasal canal. It is considered temporary
because it is easily placed and easily removed; considered non-invasive. Liquid food (similar to Ensure) is then put through the tube
per physician orders, either by using a pump (continuous) or by pouring it in (bolus). The amount, time of day and rate vary. Most
people are against the use of feeding tubes for a variety of reasons but they forget to add them to their Advance Directive’s. This will
often leave a family member to make the decision years later. A permanent feeding tube is a whole different story. These are slightly
larger tubes surgically placed through the abdominal wall and feed into the stomach or small intestine. Some people with feeding
tubes are also able to eat by mouth. Most do not and are considered “NPO” or nothing by mouth. (Latin for – not per Os). Once a
permanent feeding tube is placed AND it is the ONLY source of hydration and nutrition, it can be very difficult to have it removed.
Essentially with out it, the resident will die. There are legal and ethical implications with the removal of permanent feeding tubes. I am
not qualified to give legal advice but I will say this. Think long and hard before agreeing to have a permanent feeding tube placed in
either yourself or a loved one.
- On average, how many Nursing home elders choose to be DNR? In my experience, close to 80%. The older the
resident, the more likely they will be DNR
- What does “full-code” or “code blue” mean? Full-code or not DNR means that all measures will be taking to revive a person
that has stopped breathing and/or has suffered cardiac arrest. The younger the resident, it’s more likely they will choose to be
full-code. There are many factors to consider when deciding whether or not to be “full-code” or “DNR”. On a side note, if choose
not to choose, you will be full-code! I hope I don’t offend anyone but I’m going to be very blunt. The sad part of deciding whether
or not to be full code is that residents and families usually have no clue what it’s like to have this done in the event of an emergency.
This is real life we’re talking about. Performing CPR on a 92 year old is not like CPR on the TV show “Baywatch”. Three chest
compressions and a few respirations and surprise! It’s a miracle, grandma is alive! Not quite. If the unfortunate happens and an
elderly resident has cardiac arrest and they are full-code, the staff will do everything possible to revive them because they have to,
not because they think it will work. It’s a legal obligation not a medical decision. The staff is well aware that they are simply going
through the motions, it may or may not work. Odds are 99.9% of the time they will not revive anyone. CPR is only performed when
someone is, for lack of a better word, dead. Once someone at this age dies, there is very little hope of bringing them back. If it’s a 5
year old that has drowned in a pool 2 minutes ago, that’s an entirely different story. They are healthy, their heart is strong, even if
they aren’t revived at the scene, EMT’s or the staff at the hospital may revive them. It saddens me that some family members can’t
bare the idea of making their 104 year old grandma a DNR. I have performed CPR 5 times in 15 years and the outcome was
always the same. We tell the grieving family that we did everything we could (and we did) but we were unable to save their loved
one. They are always grateful but also very sad that the CPR didn’t work
- Can I be a “full-code” and have medication restrictions? Yes, you can. This may seem odd but some people hate
medications but are terrified that they will have a heart attack and nothing will be done. Examples of restricted medications are “No
life sustaining medications i.e. blood pressure or heart medications, no antibiotics, no psychotropic medications, etc.
- If I choose to be a “DNR” and I get sick, will they just let me die? Can I still be treated at the hospital? DNR only
applies to cardiac arrest. You can absolutely be treated in the hospital. There are a million reasons people go to the hospital for
treatment.
- How much authority does my DPOA have? If you have a designated person as your DPOA, they have full authority to make
medical decisions for you in the event that you cannot make decisions for yourself. A different family member who is not the DPOA
cannot override the decisions of the DPOA. For detailed information, consult you family Attorney.
- Can my family members make medical decisions if I have no DPOA? In the event that you cannot make medical decisions
for yourself and you have not designated a DPOA, patient advocate, etc. then the family will be consulted by the staff in the event of
an emergency. Sounds simple doesn’t it? Well, not really. There are usually more than one family member and they don’t always
agree with each other (imagine that!). The first family member with authority is usually the spouse. If there is no spouse or the spouse
has cognitive impairments, the next in line is usually the adult children. Next in line would be the siblings of the resident. Each state
may have different laws regarding this subject.
- If I am an organ donor and full-code, will the staff do everything in an emergency to save my life? This is a difficult myth
or urban legend to combat. Yes, your life trumps the value of any organs or tissue. No staff would ever let you die in order to
harvest organs or tissue. They would also never avoid performing CPR to avoid injuring an organ. It’s good to have people willing to
be an organ donor but medical staff are under no pressure to acquire donor organs or to protect organs from damage related to
disease or mechanical damage from CPR. I am personally an organ donor and my driver’s license indicates such. For all I care, they
can have any healthy organs, tissue, bone, etc. If my donation can better a life or save a life, that is a good thing, I’m not going to be
using it anyway! Also, every major religion endorses organ donation.
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