Holding On

Mr. Thai cried himself to sleep both nights that I worked with him. He also cried after calling out his wife's name in vain every morning upon waking. His tears broke my heart.

Mia: Does your wife know how important it is to you to be near her right now?

Mr. Thai (tears falling onto his cheeks): Yes, she knows.

I'd read the report in his chart, "Wife appears to be having difficulty coping. Wife states to physicians that she is unable to care for the patient at home. She would like to find in-patient hospice placement for her husband."

Letting go is a process. For both the dying and their loved ones. The best we can hope for is to walk families through this process together. Helping them to hold hands, compassionately with one another before it is time to open their fingers and let their hands part. I like to think of my job as being a "Midwife for the End of Life" (yes, good point, JennyNYC, the similarity between deciding between home birth and hospital births is not lost on me). Just as a midwife does to help families bring a new life into this world, I am serving as guide through a potentially frightening though loving experience for a family as a life leaves this world.

Mia: How long have you and your wife been married?

Mr. Thai (sobbing to the point his speech is barely comprehensible): 50 years. I have woken up with her beside me in bed every morning for 50 years. This is why I call out for her each morning I'm in the hospital.

Times like these, especially as I listen as the wife's phone rings and rings and I cannot reach her to try to bring these two together, the ache in my heart is almost unbearable.

And the question again arises, this time during my appointment with my massage therapist today, how do you cope with being present with other people's grief around you all the time? Well, for one, I get lots of massages! :-) And for the other, an interesting analogy came to me:

When I try to turn my patients by myself, my massage therapist scolds me as she does her best to repair the damage to my back. When I ask a co-worker for help, my back thanks me as I realize how much easier it is when two people turn a patient together. When a patient is particularly upset at night, I call the hospital chaplain. 99% of the time, a half hour with the hospital chaplain will make a huge difference for the patient. I don't do this work alone. There are times, even when the patient refuses chaplain services, I will ask the chaplain to come by at least to introduce him/herself. Though sometimes, perhaps I should be the one sitting down with the hospital chaplain for a half-hour. :-) There is an African proverb that I'm sure most of you have heard, "It takes a village to raise a child." I'd say it also takes a village to bury one. And by child, I am referring to all of us.

Today, I am thinking of Mr. Thai and hoping and trying to trust that the village that is my hospital is helping to bring him and his wife together.

Where Do You Want to Die?

---NUMBERS---

According to End of Life Issues edited by Brian de Vries:

In 1949, the norm was still to die at home.

In 1990, 60% of deaths took place in institutional settings and only 17% occurred at home.

Home deaths are more common in the UK, Japan and Australia than either the US or Scandinavian countries.

In a 1993 study of adults in Australia and Italy, there was a 3 to 1 preference for dying at home verses in the hospital.

In a 1976 study in Los Angeles, African Americans preferred home verses hospital by 2 to 1. Mexican-Americans by 5 to 3.

In a small 1999 study of 25 women with stage 4 breast cancer, 38% wished to die at home; 24% preferred to die in a hospital or other institution; 24% had no preference for location; and 14% were undecided.

In studies conducted from 1984 - 1995, when the hospital was the only alternative, 54% - 74% of dying people wanted to die at home. When hospice was the only alternative, 53 - 58% of dying cancer patients and 32% of dying AIDS patients preferred to die at home.

Looking at the first sentence in the paragraph above, that means that 26% - 46% of dying people wanted to die in the hospital. Why not die in the home?


---ADVANTAGES---

HOME
-increased social interaction with family
-avoid potential for insensitive paid caregivers
-patient is more comfortable in familiar surroundings
-less expensive
-family has higher level of involvement in care and as a result the dying experience may be more meaningful


HOSPITAL / INSTITUTIONAL SETTING
-24 hour professional mental health and spiritual support easily available
-pain control adjustments made more easily and quickly
-patient prefers to be less of a "burden" on family
-family does not feel they could cope with caring for the dying loved one at home
-able to manage more difficult symptoms such as dyspnea (difficulty breathing) or intractable pain


As I hope you can see, where you want to die can be a very difficult decision. Where do *you* want to die? Ultimately at that time, you (the individual) will hopefully be the one to make this decision. However, this decision is frequently complicated by a number of factors including circumstances related to the illness and conflicting family needs.

I hope and wish for each of us to have the death that would be most meaningful for us and hopefully our deaths will occur in a place that makes us feel safe, loved, and cared for whether we choose to die in a specific setting or are given no alternative where our death will occur. Regardless, may we all find peace at the end of our lives.

Why be Normal?

I feel like I unintentionally hit a nerve with my last post. I think I had been a little out of my groove when I wrote that piece. I was working as charge nurse, so I hadn't been working with that patient nor his brother as directly as if I had been his bedside nurse. So perhaps that left me feeling disconnected from the experience and thus more out of touch. (I also had on the charge nurse hat of "Will this family member sue for emotional trauma if we let him go to the morgue?") I hate that I sound so defensive. But the responses I got to that posting were simultaneously heart-warming and shaming. Shaming in that I did not mean to come across as judging that patient's brother for his decision to escort his brother to the morgue. (No, Cori, you are definitely not a freak nor was this family member one). I was, however, sincerely surprised at his request. It had never occurred to me before that anyone would want to go to the morgue. Perhaps that comes from the perspective of working with co-workers (nurses and nursing assistants) many of whom are very uncomfortable in the morgue. I think my first time there, I was less comfortable than I am now, though now my feelings are a little different. And imagining that same discomfort complicated by the feelings of loss for my loved one seemed unbearable to me. But it's true. That is my own personal feelings, not this family members, though I think I acknowledged that in the end of the posting.

It was heart-warming that so many of you seem to understand the brother's perspective. And I feel enlightened by your responses. Part of why I put that posting out there was in the hopes that someone would help me understand his perspective better. And you all have certainly stepped up to the plate. Thanks so much, again, to all of you for sharing.

The Witnessed Bagging

For the first time ever, I had a family member *insist* on watching their deceased loved one bagged and *insist* on escorting the deceased to the morgue.

Family members are not allowed to go inside the morgue, however nothing official prevents them from riding in the elevator and walking alongside the gourney en route to the morgue.

What would make someone want to go through this portion of the process? Does hearing the sound of the zipper and the smell of the thick plastic of the body bag help them come to terms with their loss?

I was expecting the family member to freak out. He'd already displayed emotional outbursts after his brother died that were so intense that he had frightened the day-shift nurse. If his grief was so strong and close to the surface, could he handle the potential trauma of seeing the white bag slowly obscure his beloved brother entirely from his view?

People usually know what they can handle, I suppose. As he apparently did. He remained calm throughout the entire experience and even thanked all of the staff afterwards for their care towards his brother.

Movie Review: My First Mister

When I first read the cover of the DVD, I thought to myself, "How odd! Why would I have picked this movie for myself?" The cover said it was about a young girl with a dysfunctional family and her friendship with a neurotic older man. Somehow that description didn't excite me. But when the movie started, I thought, "Wow. I must have had an idea of what I was getting." The protagonist is a young woman obsessed with death. Unfortunately, those first few minutes were the highlight of the film. As the movie continued, I was quickly offended by the gratuitous anti-fat message thrown in. And I made a quick anaysis that I was watching just a slightly punked out version of a schoolgirl and older man love affair (the protagonist has the whole gothic look going on and has numerous piercings and tattoos). However, in the last segment of the movie, I realized how this film fell into my hands. We learn that one of the characters is dying. I can't say this was a good film. I am beginning to wonder if there could be any films on death and dying that I would like. I think any fictionalizations would be dull in comparison to the real life experiences I've already had. But I'm still searching. I'm definitely open to suggestions. I did like Wit. So I guess that's at least one film on my thumbs up list.

Although I don't believe it's on death and dying at all, I am very curious about the new movie WHAT THE BLEEP DO WE KNOW. Has anyone seen it yet? I'm hoping to find time to hit the theaters during "normal" people hours, so I don't have to wait till it comes out on DVD for one of my late night home movie viewings.

Death Trivia for the Day

In Ancient Egypt, a pair of Wedjat eyes (also known as the Eye of Horus or the Eye of Ra) were painted on coffins allowing the mummy to see into the world of the living. The Eye of Horus was also believed to have healing and protective powers, and was used as a mathematical device to prepare medications.
 

Portal Open Between the Living and the Dead?

I am starting to suspect that a portal really did open up between the living and the dead on Halloween. Two of our palliative care patients who were thought to be in their last 24 hours suddenly bounced back.

One had developed a death rattle and her oxygenation level had dropped to 50%. [The brain and body normally needs a saturation level of 93% or higher unless someone has long-term respiratory disease in which case they may have adapted to levels as low as 80%, though even then they use oxygen to keep their saturations in the high 80's to low 90's.] The next morning, this dying patient woke up, got on the commode to go to the bathroom and said, "I'm hungry. What time is breakfast?" It was like witnessing a miracle.

A second patient had had a stroke and the doctors were certain her brain would herniate and she'd die within a day or two. Unlike the doctor's expectations, she woke up more and more and now, despite some difficulty moving one half of her body, she looks like she's suddenly got a few more years left in her.

I have *never* seen anyone come so close to death and bounce back as these two have. And what are the odds of this occuring on Halloween just after a lunar eclipse? Am I the only one who sees something other-worldly in this?