Wednesday, March 10, 2010

Rx for Life

As any ICU nurse worth her salt can tell you, sedation and pain relief is part science, and a whole lot of art. Getting the perfect chemical concoction without going overboard is delicate. If I learned nothing in the unit, I learned this. It's why I do so well as a hospice nurse on the off shift. While I don't prescribe the drugs I use, I tend to get my two cents in to the physician on what I think will work to treat poorly managed pain and anxiety. When it comes to psychic or spiritual pain though, I feel out of sorts without a magic concoction to soothe a troubled soul. Last night, I was challenged to help ease someone's emotional pain. Though I thought our visit went well, I wasn't quite sure and I don't know if I eased any suffering. It was that intense.

Many people that I meet have come to a crossroads where pursuit of a cure for disease intersects the reality that disease has progressed despite heroic efforts. It can be a frightening and sad place, or it can be the perfect convergence where modern medicine has failed and now the spiritual work can begin. While some people can never give up the fight to survive at all costs, others are able to turn from one direction to the other without too much trouble. They're ready to move ahead and spend as much quality time as they have left with the people that they love. Often, they're tired of the frequent hospitalizations, needle sticks, chemo and radiation that sap every last bit of energy and intuitively know that they need to conserve a little for the type of work that lies ahead. The people who fight death to the bitter end seem to suffer the most emotionally. Ask any hospice nurse to describe "terminal restlessness," and they will tell you it is the most difficult crisis we encounter. I've witnessed patients run in circles around a bed as though something is chasing them and, indeed it is. Death. When I see this, I know the end is quite near for these people; sometimes only hours or a day or two away. It's a traumatic event for patients and their families, though not everyone encounters this. People who are prepared psychologically and spiritually often pass from this world quite peacefully.

Plenty of people tell me they can't do what I do for a living. I hear this a lot, especially when I go to a home to pronounce a death. They say this as though death is something that's abnormal and that it takes a special person to do this. Perhaps they think my work is of the macabre; very dark, mysterious and disturbing. After all, none of my patients escape death. There are no close calls in hospice that have happy outcomes, but I believe in my heart that there can be good outcomes. We can die a good death and this one idea is more about making the most out of life than it is about dying. This basic tenet is what I hold onto when I start to feel as though hospice isn't a good fit for me. In my mind, my job is part mission, and partly a way to pay my bills. Mostly it's a mission. There are easier ways to earn a living in nursing.

Long before I started down this path, I read the book, Dying Well, by Dr. Ira Byock. I bought it when my mother in law was dying and right after my best friend's daughter was killed. This is such a well written book on the art and challenges of being a hospice practitioner with stories that bring meaning to our human condition. I followed up this book with the second book this author wrote, The Four Things That Matter Most. My closest family members have read both of these books and have found them beneficial, too. They're not only handbooks for the dying, they're great guidebooks for living.

In a nutshell, these four things that matter so much are love, thankfulness and giving and receiving forgiveness. This book was life altering for me. It's not easy to ask for and give forgiveness, but we humans are imperfect creatures. It only stands to reason that over a lifetime, we may need to give and receive forgiveness more than once. As for love, well it seems to me it's something we all strive to feel and give. Some are luckier than others in this department. Being thankful can be difficult, especially if someone is dying, but I think it's important to tell the people who matter in our lives that we're thankful for them and long before we're losing them.

What I took away from both books is the importance of being ready for the curveballs life can throw at us. We never know when it'll be our own turn to leave this earth, so it's important to live a life embracing things in our lives that matter most. Several years ago, my best friend lost her daughter abruptly when she was hit by a car. As horrific as that was, their relationship was in a very good place which helped my friend to heal and survive this event with her psyche intact. When we talk, she never ends a phone call without saying, I love you. It's important to her. She lives the principles in Dr. Byock's books.

It's been awhile since I've read these books, but I plan on rereading them from a new perspective as a hospice nurse.

In the meantime, I do what I'm able and ask only for insight and clarity when I'm trying to help those who make me think outside the box.


Stephanie V said...

Thanks, Rudee. We aren't very good at dealing with death in our culture. People like you are a blessing for families who are caught in what is, for them, unspeakable.
Keep on making us think.

Brenda said...

These sound like books I will pick up on my next trip to the book store. Thanks for writing about this. I think we could all benefit from making the most of everyday.

sapphireblue said...

This is a great posting. Dealing with death is something we all have to go through at some point. A prolonged dying process like someone who is in hospice is not something I would have thought I would experience. That's until my mom was in hospice for 4 years. There are a lot of things I should have said to her before she died, but we were estranged.

Rositta said...

I've always believed you and hospice work was a perfect fit. I suppose I'll be one of those people who runs "around a bed". I have some experience with death mostly not easy death. I guess I hope to just fall asleep and not wake up as I'm sure most of us do...ciao

Ruth said...

What you say is so true. i remember the story of 2 of our patients who were dying - they had the same disease knew each other, were only young ( 20's) and both had been very unwell for around 12 months,the one who was dying first said to the nures looking after him " tell Julie its going to be OK". I will never ever forget these 2 patients along with many othere that have a special place in my heart.
Rudee is so right death can be a amazing jouney for patient and family. We should all talk about it much more so all our wishes are well known by family and caregivers.

debra said...

Both my parents died in Hospice. These were some of the richest times in my life. They both knew what they wanted, and we were able to speak for them when they could no longer speak for themselves. An honor, really.

Quiltluver said...

You give us a lot to think about. I think it takes a special person to be a hospice nurse, and your patients are lucky to have you taking care of them.

Gail said...

You are an angel. You ease the passing for many with a heart as big as Texas. Thank you.

Lisa L said...

terminal agitation...the absolutely cruelest thing about the dying process. i once had a patient call me (at home...she looked me up in the book..small island..we're all listed..).."lisa..i can't sleep." it was about 12.30am. turns out she was worried about life (or not) after death. we talked for hours. i hope i helped. but you never really know...her's was the death of a youngish woman who fought her dying, relentlessly, to the end..poor darling. her's was not what you and i would call a 'good death.' i think of her often..and she died way back in the early 90's. she had a profound effect on me. because of her unbelievable will to, well, not die without fighting until the last minute. one regret i have: she used to always say.."i love your perfume"..i only wish i'd bought her a bottle (Anais Anais)...why didn't i for the love of god?

Finding Pam said...

Facing death as a child was very hard for me to deal with, but now I realize that is was preparation for me when my mother died.

Being with her was one of the greates honors I have ever had. I no longer fear death, but see it as the begining of a new state.

Folks are blessed to have you for their nurse. Compassion goes a long way,

Michaela said...

Thats a very profound thing to share about Rudee, thank you... I too am trained in nursing (but dont practise, as music teaching suits me better). I love that you are both practical and profound. I know what you mean about terminal restlessness. It would be easier for the patient and all their loved ones if they were to accept death. But sadly some people never do. I think a fair bit about how I will handle it, when its my time (Im only 40, but Ive already lost a few people to accidents & illness). I will definitely read those books. I try to live my life as if it really me what matters is being a great wife, a great mom, and somehow leaving the world a better place than when I first came into it.

Larjmarj said...

Thanks for sharing your amazing insight in to something that I think most of us have a hard time dealing with. Even though I've been in health care in the hospital for 8 years, I still don't do well with CA patients or those who are clearly terminal. Even amongst friends and family I never know what to say and unfortunately avoid them because I'm afraid that I will say the wrong thing.

Rudee said...

Larjmarj, you can't go wrong with thank you, and I love you. For patients, I often ask questions about what they did for a living and this breaks the ice. People want to talk about their lives as the do their reviews. It helps them immensely.

Sandy said...

This was so helpful reading this. I have a friend, my best friends for twenty-five years who is now on hospice for COPD and CHF. She is one of those who is not going to let go easily and it's been a little difficult for her family sometimes and myself actually the last time I went to see her a week ago.

I'm going back up today and staying with her a few hours while her son runs some errands.

I may be emailing you one of these days with some questions, if you don't mind.

It's so hard to watch her suffer...both pbysically and spiritually.