I never considered myself as such. I always thought I was answering my call to God. My families have called me an angel, a comforter, an indispensible part of their life in a difficult time. But current events tell me that is not the case. I thought I was providing medical care for a population who were nearing the end of their natural life-cycle. I have a nursing license and a national accreditation to provide this specialized medical care. But something has changed.
In today's paper was a column by Charles Krauthammer wanting to be honest about end-of-life counseling. I like Charles' columns. We agree on many things. But not today. Bear with me while I relate part of the column.
"What do you think such a chat would be like? Do you think the doctor will go on and on about the fantastic new million-dollar high-tech gizmo that can prolong the patient's otherwise hopeless condition for another six months? Or do you think he's going to talk about, as the bill specifically spells out, hospice care and palliative care and other ways of letting go of life? ...
So why get Medicare to pay the doctor to do the counseling? Because we know that if this white-coated authority whose chosen vocation is curing and healing is the one opening your mind to hospice and palliative care, we've nudged you ever so slightly toward letting go.
It's not an outrage. It's surely not a death panel.
But it is subtle pressure applied by society through your doctor. And when you include it in a health care reform whose major objective is to bend the cost curve downward, you have to be a fool or a knave to deny that it's intended to gently point you in a certain direction, toward the corner of the sick room where stands a ghostly figure, scythe in hand, offering release."
Other ways of letting go of life? Opening your mind to hospice? References to a ghost with a scythe?
When did hospice and palliative care become a bastard of the healthcare system? When did we become expendable, devious, deceitful and less desirable than our labor and delivery or surgical counterparts? When did hospice become synonymous with euthanasia? By the way, when did we become immortal?
I want to set my hair on fire.
I have been reading about "death panels", how discussions of end-of-life issues will "push" someone into a decision they might not otherwise make. I would argue that NOT having the discussion fosters an environment where honesty and an acceptance of reality become impossible. A patient is pushed into unnecessary or unrealistic treatment - to their detriment - because "something" has to be offered. They hope for a miracle. That's not sound medical care. That is cowardice or greed on the part of the physician. Cowardice because they are afraid to have "the talk". Greed because these treatments are really expensive.
But there is another way. The Baby Boomers are consumers. They like choices. Why isn't stopping treatment a reasonable alternative to consider? This doesn't hasten death - as some attempts at curing might do. It embraces the reality that we are mere mortals. One of the most frequent comments our hospice receives from family members is "I wish I had known about hospice sooner" or "that I wish I had started sooner." Late referrals happen because honest discussion has not taken place.
We have a beginning and we will have an end. It has been that way since the beginning of time. Those that embrace the end of their life learn there is much living to be done that doesn't involve unnecessary chemotherapy, radiation, endless doctor visits with poor results. There is a time and place for all of those things. BUT there is also a time and place to stop those things. The timing of that is ultimately up to the patient or the family member the patient chooses to speak on their behalf. However, it is up to the doctor to start the conversation. He or she has the breadth of knowledge to assess if the treatments are working or not. I would argue that to do less would be unethical. And why can't they get reimbursed for doing so.
“And then normal sank.”Have you ever read a book and the words scream at you from the page?I just finished reading the Life of Pi by Yann Martel.Truer words have never been spoken – I know how he feels.
December was here, I was case managing, my husband was working, everything was “normal”.And then normal sank.In January my manager left and I was asked to assume the Team Manager role for 90 days or less if a replacement was found.I worked long hours, learned and experienced MANY new things, received verbal commendations from my superiors, had the respect of my team but it was not satisfying work for me.It proved to be highly stressful and anxiety-producing.After four months I expressed a desire to return to my case manager role.Everyone was understanding and accommodating.I worked for two days as a case manager and then was told not to come to work as they didn’t have enough for me to do.Now I am left with random on-call shifts to fill the void and a very small paycheck.The job market in health care is very fickle at the moment.Many jobs are posted but few are being filled.Everyone seems to be “waiting” but for what I don’t know.
During this same four months I learned that I am to be a grandmother in September and my husband lost his job in March.
My normal has sunk.I find myself in a lifeboat with some provisions but how long will they last?When will I be on solid ground again?I don’t particularly like my situation.But I understand that God is in his heaven and ultimately remains in control.I take encouragement from Pi.Fear is counterproductive – an opponent to be defeated.Suffering matters and animals make the story better.
I don't know if it's the time of year, or my hormones, or maybe I'm just missing my mom ... but this week has been SO sad for me.
The man I saw on-call in the house without heat is now warm. His body was "unclaimed" at the hospice facility because his son had no transportation to get there. The son, Carlos, was very devoted. In my haste to remove the patient from his refrigerator for a house, his son never got the chance to say good-bye. The patient's death summary simply said "Patient died at 3:30. No family or friends at the bedside." There will be no obituary. There is no family. This man will be buried unknown to most people. BUT his son continues to live in that house with no heat. Now that the patient has died, the son is not eligible for any governmental assistance. The filing process starts over from square one. We are trying to see what we can do privately to help the situation. The thought of Carlos living in that house haunts me.
Today I found a Christmas card in my mailbox at work from the wife of a patient I had 2 years ago. I have not spoken to her since shortly after the funeral. This is what she wrote:
Dear Leanne, You took care of my husband, Mr Hattie. Toward the end, he would say "Is Leanne coming today?" You were so much help. (Oct. 2006)
Cancer hit again. My [only] son Bob had cancer of the colon and died August 22, 2008. It was a terrible blow to me. It didn't seem fair. He was all I had left.
I'm still in my home and will be 90 in a week or so. I try to live a day at a time and try to find some joy that day. Was thinking of you and hope you and your loved ones have a good Christmas.
Love, Hattie
Hattie lives 1 mile from my house. Reading this was profoundly saddening to me. I know Hattie to be very stoic and reserved - not showing any emotion. She would leave a room rather than let you see her cry. My first thought was how lonely must she feel that she's reaching out to her nurse from two years ago. She has no grandchildren. She's outlived her immediate family.
I feel like Scrooge and the ghost of Christmas Present is showing me all of the "invisible" people around me who are hurting, needy, maybe just desperate. This week is really hurting emotionally. I feel like I'm living the Beatles' Eleanor Rigby song.
Ms. Effie, who didn't warrant antibiotics yesterday, died mid-morning today. I'm not sure the medication would have helped but my conscience would feel better if we had at least tried.
My patient that I transferred to the hospice facility made the transfer okay. The social worker spoke with him before she left for the day. He said "I'm finally warm. I'm going to sleep now."
