In Part One, we examined the need for choosing a Health Care Proxy and making decisions about your Advanced Directives. In Part Two, we examined the realities about CPR and artificial nutrition. Those are the big decisions that you need to make, but there are other things you may want to consider and put in your Advanced Directives/Living Will.
Hospital Transfers (Do Not Hospitalize order): If you are in a nursing home or even receiving treatment at home, you or your HCP can request a Do Not Hospitalize (DNH) order which is basically what it says. If you were to become acutely ill, you would not be sent to the Emergency Room for evaluation and treatment, but be treated where you are, non-aggressively. Hospitals can be a crappy place to spend your last hours. Busy, noisy and intrusive not to mention frightening to someone with dementia or really anyone in crisis. Hospitals are not the place for a peaceful death – if that is your goal. However, without an explicit order, it’s possible that you may get sent in by a skittish provider who is not familiar with you or your wishes.
No Diagnostics or Treatment: You can also ask to have no diagnostic work – blood work, x-rays etc. And request not to be treated for such common ailments as a urinary tract infection or respiratory infection. You may decline surgery, dialysis, blood transfusions and medications.
Organ Donation: Please, please, please be an organ donor. Let your family know of your decision and register as an organ donor. Even if you or your loved one has been sick for a while, they may still be eligible to donate skin, tissue or corneas. There is a myth that if you register as an organ donor, the ER staff will not work as hard to save you. Nothing could be farther from the truth. ER doctors and nurses live to save lives. It’s what they do, it’s who they are. Trauma unit staff take it personally if they can’t save you. It’s all they think about. They are not going to let you die if there is a single thing they can do about it. So please don’t not register because of this urban legend.
There are always going to be situations that don’t fit into the categories we have discussed. Again, I will recommend Five Wishes. This tool helps you think about life and death and what you priorities are. You can also use it to think about what a loved one may have wanted, if they haven’t expressed their wishes beforehand.
Nothing is harder than to have to make these decisions for someone you love. Please try to talk about this with you loved ones. Even if you can’t talk about it directly, try to understand and appreciate what makes life worth living for them, what their spiritual beliefs are so you can make the best decisions should you ever be in that position. And always remember it’s about the person who is sick, not about you. What would they have wanted? How would they want to live or die? What was important to them?
For anyone who is going through, or has gone through this, you have my deepest sympathy. I hope you are able to find peace and feel that you have done the best for your loved one.
As promised, an excerpt from my own advanced directives:
In the event that I
a) Am in a terminal condition caused by illness or injury and have no reasonable hope of recovery or becoming aware of my surrounding or being able to use my mental abilities and/or;
b) Have a progressive illness which will continue to worsen and result in my death and which cannot be improved or cured –including, but not limited to, progressive neurological diseases including, but not limited to: Alzheimer’s, Parkinson’s, ALS, MS, or any form of dementia and/or;
c) Have any condition that makes me unable to recognize people or to speak understandably and this condition is permanent and cannot be improved or cured, but is not considered in and of itself to be terminal, including, but not limited to, a persistent vegetative state, coma, severe stroke, injury or the progressive neurological diseases or dementias listed above, my wishes regarding medical intervention are the following:
No resuscitation (no manual, electrical or chemical cardiac resuscitation)
No intubation or any form of respiratory support (see below re: oxygen
No dialysis, no blood transfusions
No surgery for any reason or condition
No oral or IV/IM antibiotics or any other medications given with the intent of saving or prolonging my life. Any underling medical conditions such as (but not limited to) diabetes, hypertension, DVT should not be treated, nor do I wish to be treated for any acute illnesses including (but not limited to) urinary tract infection or respiratory infection.
No artificial or supplemental nutrition or hydration in any form or via any mode of delivery.
No diagnostic testing or monitoring whatsoever. No blood work, no imaging nor any other test invasive or non-invasive to diagnose any illness or condition.
If I am in a skilled nursing facility, sub-acute or rehab hospital, no transfers to any acute care hospital or emergency department for care or evaluation under any circumstance.
I DO, however, wish to be given any medication, including, but not limited to, narcotic and/or non-narcotic pain relievers, benzodiazepines, anticonvulsants or similar medications IF the sole purpose is to decrease pain and/or increase comfort. As a nurse, I fully understand that these medications often, when used in amounts necessary to fully ease suffering, may hasten or even cause my death. I also authorize the use of oxygen so long as it is being used for comfort measures and not for prolongation of life.
