Coming Home

"You're angels," they say. "You're saints for doing what you do."

How little they know.

Most of us came into this profession - hospice, if not nursing in general - because we have lost. We have lost someone, or many someones, and have come to truly recognize and accept the inevitability of death. What bugs me at the moment about health care in general is the lack of knowledge amongst MDs about end of life teaching and support. The medical model is based upon curative measures: analyze the symptoms (and lab work where applicable), come up with a diagnosis... treat! Cure! Death is not an option, no matter what the cost - physically, emotionally, financially - for the patient or his/her family. Education in this regard is changing: more medical schools are beginning to incorporate palliative and hospice care into their curricula. Awesome. Speed it up, will you? And require older practitioners to participate in continuing education that includes palliative/hospice care? Thank you. 'Cause chemo/antibiotics/fluids/blood/beta-blockers/insulin/etc don't always work.

Every day I walk into work, and there are fresh flowers delivered from a family directly from someone's funeral, fresh coffee (because the previous shift/CNAs/volunteers are amazing), hugs and gratitude from family members of those who are in our care. Part of me feels unworthy. I am simply a person doing my job, which happens to be incredibly important to me. The other half of me is overcome with gratitude. After 3 years in the ER, being almost continuously verbally and sometimes physically assaulted, after tirades from people waiting in triage for seven hours.... Hugs and flowers and coffee are a most welcome change. There's a piano in the family lounge, for chrissake. Hell, there are *three* family lounges. One with toys and books for the kids. And shelves upon shelves of books and music.

And so, with painted walls, a balcony, fresh coffee, and warmed blankets, they declare us Saints.

But I am no angel. I am no saint.

I - and many of us - came to be here, in hospice, in nursing, because we are accustomed to the front line. We are acclimated to literal shit, to horror, to mayhem, to suffering. We are accustomed to things that some people have never experienced - and we hope never will. And you come to us with your wounded, your half or nearly dead - and we revive, or we let go, according to the patient/your wishes. And maybe we seem detached, cold, unsympathetic at times. It's not that we don't get it. It's that your loved one is not *our* loved one - and that is fortunate for the patient on the bed/table/gurney, because otherwise we could not keep our heads together.

My own grandmother is in a nursing home with Alzheimer's. I care for Alzheimer's patients on a nearly daily basis, and I deliver them comfort care the best way that I can as a hospice nurse. I am told that I do a good job. The patients' families are so appreciative, so kind and complimentary. Grateful.

But my own grandmother? I have not had the balls to visit her in over a year. Because I cannot bear to see the shell of the person I knew her to be. I am ashamed of myself for this. How can I be a hospice nurse and yet not participate directly - as a granddaughter - in her end of life? It's too much. I can't take the nursing hat off and simply be her granddaughter, because it hurts too much. I asked my mother recently - with my nursing hat on - how much my grandmother was eating per day. Three full meals. I broke down in tears and had to leave the dinner table, because it was too much to bear that my grandmother does not know any of us - her family, her children, her grandchildren, all of whom she lived for - and yet is physically strong enough to maintain an appetite, to sustain her blind existence, to continue in this way for however many years to come.

I wished her body to be less capable, faster. I wished her bowels to be less capable of processing food, and for that progression of her disease to lead to less hunger, and for that lack of hunger to lead to less nutrition, and for that lack of nutrition to lead to a swift and painless death. I wished for a fall with a head strike so fierce that it killed her instantly.

Because *I* can't stand it. Because I am selfish. Because I am impatient. Because I - and my family, most notably my mother - are not only bearing the weight of old memories she no longer retains, but we fear our own futures, our own inevitable declines.

So, no. We are not angels. We are no saints. We are doing for your family what perhaps sometimes we cannot do for our own. We are projecting our hopes for our own loved ones onto yours. We are prepping ourselves, shielding ourselves, arming ourselves against what will eventually hit us directly home.

Florida Shoots Itself in the Foot

Although this article ("The Question Doctors Can't Ask," written by James Hamblin for The Atlantic) is now a few months old... please take into consideration that seven months is a very brief period of time in the health care and law milieux - very unlike that of social media. When it comes to research, nursing schools in general teach that peer-reviewed studies less than five years old can be considered reliable sources of information. Obviously, this article is not a peer-reviewed study. That doesn't mean it isn't worthy of ten minutes of your time - we are all (MDs and RNs included) someone's patient at some point in time (ideally across the lifespan but that's an entirely separate issue).

The item addressed in the article - Florida's relatively recently imposed law that doctors/practitioners/health care facilities are not allowed to inquire if a patient has a gun in the home - is one that could potentially affect many (particularly "red state"), if not all Americans, given the trend of "monkey see, monkey do" legislation among the states of our country (see: the addition of questions re: gay marriage and/or the legalization of marijuana to ballots nationwide in recent years).

I also humbly ask that you consider the notion that we are a nation increasingly overrun by political correctness, which seems to be a large part of the reason why this legislation passed to begin with. I personally believe the PC trend is equal opportunity in terms of its applications by Republicans and Democrats alike.

Questions that Florida lawmakers need to address (from the humble perspective of an RN):

Does "facility" mean hospitals and hospital-affiliated clinics, or also include private offices - in particular, those of psychiatrists/psychologists?  Does "licensed practitioner" refer solely to physicians, or are licensed RNs considered "practitioners" as well (as opposed to licensed "professionals")? Define medical "relevance" as it pertains to this particular law - what particular presence or absence of symptoms/diseases would deem the presence of a lethal weapon in the home "irrelevant" to the overall health and well-being of the patient and the people they live with? Shouldn't the overall risk of the presence of a weapon in the home be something at least ASSESSED by a health care professional, at some point, in some health care setting? A doctor? A nurse? A social worker? Counselor? Anyone?? Bueller???

Note to the general public: Lots of health questions have the potential to "offend." Guess what, patients (and we all are patients - including MDs and RNs)? Grow a pair of whatever anatomy fits, and deal with it.

I acknowledge that as a Registered Nurse, I am biased in this statement, but I'll say it anyway: RNs are rated year after year as one of the top most trusted professions nationally, right up there with teachers and firefighters. If we're talking clinics/hospitals here, dear Florida, why not allow the RN ask the tougher questions (which in practice, we generally are already doing, anyway) and use his/her clinical judgment to determine if MD (or Social Worker) notification is indicated? Just a suggestion.

In light of the statistics as mentioned in the article.... What an idiotic and dangerous piece of legislation. Know what's more offensive than your doctor/nurse asking if you have a gun in the home? As Mr. Hamblin responsibly addresses: Your 7 year old seriously injuring or killing (or being seriously injured or killed by) someone because s/he was curious how the gun worked and is not developmentally capable of understanding the risks of their "play," much less the permanence of death. Your disoriented family member (with Alzheimer's, dementia, schizophrenia...) getting a hold of it. I myself would have committed suicide (and most likely successfully) at age 14 had my parents not stored my dad's .22 safely (possibly per the urging of my physician).

All because no one was allowed to ask if, a) a gun is in the home, and, b) if it is properly stored. Because someone could be "offended." 

We're health care workers. We do our best to keep our own personal values/opinions/political beliefs out of our professional environments. You (general public/legislators) need to do the same, if we are to perform our jobs and promote your well-being to the best of our ability.

Oh, Florida. I pray you haven't started a trend.

Leave No Man Behind

After three years working in the ER and two years working in hospice, even I had to take a few breaks while watching A Certain Kind of Death, an hour long 2003 documentary based in Los Angeles and focused on what happens to the remains and possessions of those who pass away with no next of kin. While there are graphic images of the deceased during various stages of the process (from discovery of the body through cremation - consider yourselves warned), the film focuses primarily and respectfully on the business end: retrieval and identification of remains, attempts to discover and locate next of kin, storage of the remains, the cremation process, storage of cremains, accounting and distribution of assets... and finally, if no claims are made to the deceased within a set period of time (usually a few years, depending on local laws), mass burial of unclaimed cremains.

From ER to hospice, if there is a singular most poignant thing I have learned, it's that there is nothing sadder than caring for a person or the remains of a person who has literally no one able (or more sadly, no one willing) to claim them. To let go of the hand of someone who has died with literally no other hand to hold is one of the most devastating features of the work I've done, and an experience I've had too many times.

This documentary is 12 years old. If anything has changed on this subject, it's that the problem has gotten worse in many places. Case in point: Detroit. Toss in an aging baby boomer population, a large number of undocumented immigrants, and the fact that fewer and fewer of us live and die where we were born... The math isn't hard.

Stay connected. Write your advanced directives*, so that even if you die alone, those of us who find you can ensure you are not LEFT alone.


*linked site is for Wisconsin - friends/family in other states can find your state's applicable forms very easily with a quick Google search).