boobookitteh

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No One Here Gets Out Alive: The Thrilling Conclusion

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.

No One Here Gets Out Alive Part 2: DNR and Artificial Nutrition

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In Part One of our series, we all accepted the inevitable and subsequently gave serious thought to who we would choose to make decisions for us were we unable to do so.   Nah.  I know we’re all still in denial.  That’s why I plan to keep nagging you all by talking about this with some frequency.  Today we will talk a bit about some of the actual decisions you need to make for yourself, and possibly for a loved one.  Because I would like to not overwhelm you with information and give you enough information, I will break this down a couple of issues at a time.  Today we will discuss the two biggies:  Do Not Resuscitate orders and artificial nutrition.

DNR stands for ‘Do Not Resuscitate’.  What this means is that if your heart stops beating and you stop breathing, your medical and nursing providers will not attempt CPR or any other means of restarting your heart or breathing.  When making this decision it is important to be realistic about the limits and success of CPR.  TV representations of CPR are very unrealistic, with survival rates over double that of real life.  Also, contrary to what you may see on TV, people don’t get up and walk around after being resuscitated.  They spend days, maybe weeks, in an Intensive Care Unit on ventilation and, if they survive long enough to be discharged, a rate that has been described as being close to zero,  there is often residual physical and cognitive damage and months of rehabilitation that follows.

CPR survival rates range wildly and are affected by how sick you were in the first place.  Generally speaking, 3-37% of people outside of a hospital who get CPR survive the initial resuscitation.  It’s 3-15% for in hospital attempts, reflecting the poor outcomes for people who are already sick or elderly.  Again, this is ‘survival’ of the resuscitation attempt only.  As an historical side note, it has been noted that CPR survival rates have gone down since its introduction because it is used so often on people who are not appropriate candidates (people too sick or of an advanced age to survive)

The best candidates for CPR are younger, generally healthy, victims of trauma or who have a sudden cardiac arrest caused by an arrhythmia.

If you are making this decision for an elderly family member, the simple, honest truth is that they will not survive the attempt.  And even if they do, they will never get out of the ICU.  That is the blunt and honest truth.  Even more ‘Dr. House’:  we will do nothing but crack their ribs into pieces and disrespect their death by attempting it.

DNI: Do not intubate.  This generally goes along with a DNR.  I have seem some orders that are DNI only which is utterly nonsensical as you will need to be intubated if you stop breathing and your heart stops.  Why do CPR with all its intendant risks if you’re not going to follow it up with respiratory support?

Artificial Nutrition:  Artificial nutrition most often takes the form of tube feedings.  This is a tube that is surgically inserted into your stomach or intestine and a liquid supplement is infused directly in.  There are several indications for this, and it is not necessarily an end of life procedure.  For example, Roger Ebert has a gastric tube as a result of his cancer and surgery.  Anyone who loses their ability to swallow is a candidate.  People with esophageal or gastric cancer or people who have neurological swallowing issues because of a stroke are just a couple of examples.  Most of these people live perfectly fine lives with a feeding tube.  However, if you are in a persistent vegetative state or end stage dementia or end stage neurological disease, it is a different kind of decision.  You will have to think about how you would feel having this is there was no hope of recovery or returning to your previous mental state.   Many people with dementia lose their appetite as well as the ability to coordinate their chewing and swallowing which puts them at risk for aspiration and pneumonia.  A feeding tube is often recommended in this situation.  A feeding tube will only provide nutrition.  It will not cure or reverse the natural processes that are occurring.  The same is true of IV hydration.  As people lose the ability to swallow, they become dehydrated and the kidneys and body shuts down.  Fluids may be administered, but will only delay the inevitable.

It is important to note that it is not ‘starving’ someone if artificial nutrition or hydration is declined.  Any pain at end of life would be managed aggressively and comfort and dignity are the paramount goals.  In addition, the dehydration that naturally occurs results in electrolyte imbalances that cloud pain and cognition and provide a natural pain killer and release of endorphins.

I think that’s enough for today, kids.  If you want some help thinking about these decisions, there is an excellent resource called 5 Wishes that helps you think through these end of life decisions.  In the next installment, I will discuss dialysis, Do Not Hospitalize orders and organ donation – and the exciting unveiling of my own advance directives – Spoiler Alert! – Don’t keep me alive.

The awesome story behind the thumbnail pic.

No One Here Gets Out Alive – Part One

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The most awkward and painful discussions health professionals have is the conversation about end of life care.  Working in Geriatrics, I often have this conversation with family members or even friends of patients who are not able to make their own decisions.  Even in the best of circumstances, when the patient’s wishes are generally known, it is a difficult call to make.  In the absence of any idea of what that person may have wanted, it can be heart-wrenching.  In America, which is an especially ‘death denying’ culture, most people don’t want to think about, never mind plan for, their own death.  But without clear Advanced Directives and and a Health Care Proxy you can trust, you risk having your final days be everything you never wanted – including a protracted, bitter battle amongst family members, a la Terri Schiavo.

The first thing you must do is admit that you will die.  And it may not happen the way you would like or when you expect.  You may become incapacitated for a period of time before death and be unable to direct your care or make decisions.  This may happen from an accident or a heart attack or stroke.  You may also develop dementia or another neurological condition that impairs your cognition.  Any of these situations may happen at any time, so even if you think you are too young to think about this – you’re not.

Secondly, you must find a Health Care Proxy.  A Health Care Proxy (HCP) is a person you appoint to make decisions about your care on your behalf.  It is, in most cases, extremely simple to do this.  Your doctor or hospital will have forms or you can find the forms on the internet. You simply fill out the forms, have them signed and witnessed and give copies to your HCP and your alternate, your health care provider, attorney and/or any one else who will be available to provide these forms to your medical providers if you become ill.  There are also online registries, which for a fee, will archive your HCP paperwork or Living Will. Generally speaking, without an HCP, most hospitals and facilities will default decision making to your next of kin.  However, that can easily get sticky and complicated should there be disagreement among family members or if long term relationships are not recognized by the laws of the state in which you become ill and seek care. It is not unheard of for facilities to seek to have a legal guardian appointed, should the family situation become unstable.  Then you may end up with a stranger making decisions for you.

I will note here as well, that you do not have to appoint your legal next of kin as HCP.  If you are not appointing your spouse, I would recommend that you have that discussion with them and involve an attorney in drawing up the papers.

Choosing an HCP should be done with care.  You want to pick someone who will follow your wishes.  It is important to note that your HCP does not have to abide by your wishes.  The HCP you choose should understand and accept your wishes regarding end of life care and promise to act accordingly – even if your medical providers or other family/friends do not agree and pressure them to act otherwise.  Also make sure you are using the appropriate paperwork for the state in which you reside or frequent. State requirements for HCP and Advanced Directives do vary.  If you travel frequently, a trip to an estate attorney may be in order to obtain a durable power of attorney for healthcare decisions that will be iron clad wherever you roam.

Which brings us to Advanced Directives.  I will go into great detail about all the decisions you will need to make in my next post.  As a general overview, Advanced Directives are your written wishes about what kind of care you would want if you were unable to make your own decisions.  The more specific, the better.  Simply saying ‘no heroic measures’ is way too open to interpretation.  In my next post, I will review the options and share with you my own Advanced Directives document.

The problem with Advanced Directives, however, is that they do not carry the force of law.  It is simply a statement that you make regarding your philosophy of care for yourself.  I have unfortunately seen clearly written and properly notarized Advanced Directives ignored, because the HCP or legal guardian had different ideas.  But don’t let that stop you from writing them!  The more information that is out there about what you want, the better.  And all the more reason to pick your HCP with care and discuss your wishes with them

You don’t need an attorney to fill out paperwork for an HCP, however if your situation is complicated (e.g., not appointing your spouse, same sex couple in most states, long term unmarried couples) you may want to consult an estate attorney.  It’s also a good idea to appoint someone to be responsible for your finances as well and draw up a will while you’re there.

My next post will explore the decisions you need to make – DNRs, feeding tubes, etc.  Also, please let me know if there is any other information  you would like to know.

Cartoon from jakejacob.blogspot.com.

 

UPDATE:  I fixed the linkies.

 

Your Sunday Morning Open Thread

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I was going to write a little blurb about today in history.  Until I checked out this day in history.  Apparently today is the anniversary of Gallileo arriving in Rome to answer charges of heresy, the bombing of Dresden, LBJ approving Operation Rolling Thunder, additional troops being ordered to Vietnam and something about Teddy Roosevelt addressing race in America that I was frankly too frightened to read.

Thanks History Channel.   http://www.history.com/this-day-in-history

Anyhoo.  Feel free to post your random musings, music videos, cat pictures and hot girl/guy pictures here.

Oh, the irony!

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It would seem that the new layout from Facebook for pages (including our brand spanking new FB page) does not include a link for people to actually see the people who ‘like’ the page.  As you can see in this article:  http://www.pcworld.com/article/219339/facebooks_new_pages_a_handson_tour.html

I’ve been poking around and sent some inquiries about this, but it seems we are foiled by a site redesign once again.  Do we want to wait this out or ditch it and start a ‘group’ instead of a ‘page’?   I’ve belonged to ‘groups’ and they tend to be a little more exclusive and if we want to use this for marketing that would be weird.  What we could do is keep this and also start a group that would be for known commenters only where we could see each other.  How does that sound?  That may appeal to us elite ghetto peasants, right?

Fucking site redesigns.

Twitterdeedee!

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The Crasstalk Twitter account is back up and running!

I will be checking in a few times a day to see if new articles are posted and will then tweet to all our ‘many’ followers.  I do, however, have a day job and am often busy saving lives at work so I may miss your post!  If you have a Twitter account and write a post – hit me up at @crasstalk on Twitter to let me know.  Also, if for some insane reason you do not want your post promoted, let me know you would rather I not tweet about it.

And don’t forget to follow @Crasstalk on Twitter!

Sleepies with Sophia

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I understand that there are some animals that actually like to be outside in the elements.  Cats are so much smarter than that.  I am Sophia, a connoisseur of comfort.

Today I had Maggie wake up Mummy by purring in her face while I relaxed on the big chair.  Maggie thinks she’s the boss of this house, but she isn’t.  I allow her to do the dirty work because it makes her feel useful.  After gushy noms and crunchies were passed out under my strict supervision (seriously, I love my Mummy, but she is forgetful about the crunchies sometimes and I have to remind her) I settled down on the cozy blankets on the sofa.  I slept there for a while and then got up for some leftover gushies. Then I settled into the big side chair for a long afternoon nap.  Mummy keeps a lot of cozy blankets around to snuggle in.  She’s a useful creature, this human.  In some regards.

Why on Earth would any animal in their right mind want to leave the couch?