My Personal Integrity Was Wounded Tonight

Dear Barbara, I am a hospice nurse, not a nurse who works in hospice. I decided to share this with you after reading your blog on Integrity. Perhaps you or your readers can help me find some closure on my questions. This case still gnaws in the back of my mind.

Tonight I taught a coworker how to setup and administer subcutaneous hydration to a patient who is actively dying at home. The procedure went well with no complications and the family was very appreciative. We, the hospice team, have been working diligently with the family to teach them how to keep disease symptoms under control, disease progression, etc., as well as hospice philosophy which includes quality of life vs. quantity of time.

After leaving the home I spoke with the Case Manager and gave her report. During our conversation I learned that our Medical Director ordered the hydration after a lengthy phone call with the patient’s niece who is also a doctor. The niece wanted hydration for her dying relative who has been experiencing disease related nausea and vomiting and was not eating or drinking. Routine Zofran was in place at home but was not being administered as directed. Our Medical Director tried explaining to the niece that the organ systems are shutting down, hydration can cause more discomfort, fluid overload, and so on and so forth. The niece would and/or could not be swayed from her beliefs. It was either hydration in the home or in hospital.

During report and the rest of my drive home I felt myself getting angrier and angrier. At first my anger was directed at the family. Why didn’t they get it; why are they being so stubborn? Then I realized I wasn’t really angry at them at all. They were doing what they felt was best for their loved one. They were trying to have a sense of control in an uncontrollable situation.

What I was really angry about was that the order for subcutaneous fluids was given with no consideration for the employees who have to deal hands on, face to face, with that decision. By agreeing to go out there tonight I went against what I believe morally and philosophically as a hospice nurse. I am now guilty of assisting in the prolonging of this person’s misery and suffering. Doesn’t this go against the creed: To Do No Harm?

The order for hydration, even for two days, affects everyone who deals directly or indirectly with the patient and the family. We are guilty, directly or by association, for not questioning or calling out those who are making decisions and giving orders that go against the very moral essence and philosophy of hospice care. Especially when the decision is to keep a patient from revoking and going to hospital.

How far can the integrity, morals and philosophy of proper hospice care be bent or twisted before it breaks? At what point do we stand up and say “No. I will not be a part of perpetuating continued suffering”? When do we put the virtues and values of hospice above and before the financial bottom line?

Sadly, I have no answers for the questions above. My personal integrity was wounded tonight for not recognizing the inherent paradox when I was asked to help a coworker. Wounds heal and the scar that remains will be a constant reminder To Do No Harm.

Your letter presents a "conflict of interest" (end of life comfort vs. traditional medical care) situation that I think is being played out daily throughout this country and I am saddened by it. To your statement, "do no harm" from the Hippocratic oath: that concept seems to have become lost. The medical profession does a lot of harm all the time. I won't go into examples, they would fill too many pages.

At first, as I read your letter I thought you were conflicted because of the decision, by the family and subsequently the agency, to give fluids. I agree that fluids at this time in the patient’s dying process is not a comfort measure. In fact it is a discomfort and not in the patient’s best interest. Upon reading further you seem to have come to terms with the family’s decision but are upset that you had to do something that goes against your beliefs. Both of your issues are extremely valid and important so I am going to address them both.

Giving fluids because the family wanted them: That tells me as hard as we try to educate people, sometimes they just don’t get it. Our job is to educate the family, and the decision makers, about the dying process. We even have to educate most physicians as they do not understand the dying process, how it happens and how best to deal with it. If our education fails it is still our job to support the family during the dying experience--even when we consider their choice of care the wrong choice.

It appears the choice came down to home fluids or hospital fluids. As a Hospice administrator I would have told the family that giving fluids was not part of our protocol and policy. I would have offered the family one of two options: keep the patient at home (rather than move her at this critical time to a hospital) and give the fluids, but explain that they would not be financially covered by the hospice. Fluids were not part of this patient's medical disease requirements. If private pay for the fluids is not acceptable to the family then they would need to revoke the benefit, "as sad as that makes us at hospice that is what we must do." The family could then move her to the hospital or hire a home health agency to come in and administer the fluids with payment from a different payer source than the Hospice Medicare benefit.

As difficult as it is to accept a family’s choice of care, especially if it seems to us to go against what is best for the patient, we must remember we work for them. We educate, offer ideas, and suggestions. The challenge for us once a decision is made is to help them live and die with the choices they’ve made.

Defending the hospice philosophy: When hospice began it was outside of the medical model. It provided end of life care based on quality, not quantity, of life. It recognized when physical healing couldn't be accomplished there was emotional, mental, and spiritual healing to address. Over the years we learned how people die naturally and how to care for them. End of life care was an area the medical profession had not focused on. The medical profession was and still is about treating diseases that people have. Hospice focuses on people, not diseases.

Hospitals and home healthcare agencies now offer hospice services. Hospice is not outside of the medical model anymore; it is part of it. That absorption unfortunately has tainted the hospice philosophy. The services hospice provides have been influenced by the medical model. Care has also changed by the sheer number of hospices competing in any given area. If one won't provide care that would be seen as outside of the appropriate hospice services, just call another and eventually you will find one that will bring the patient on service.

SO where does this leave you, the nurse, that wants to provide quality end of life care? Be the voice crying in the wilderness, be the conscience of hospice philosophy, speak out when you see a misrepresentation. Speak carefully, with politeness and with integrity. Your employer may listen, a seed may be planted, or you may be considered a troublemaker. Figure out how you can bring about change, change in your agency, and change in your community.

I think change begins with education. If we educate our families, the community and yes, the medical community (physicians, nurses, social workers) about proper, natural, end of life care then we will hold on to that philosophy which we are in danger of, if not losing, morphing into something less that it should be. A note of caution here: if you are not finding joy and satisfaction in your work (in spite of trying to bring about change) then it is time to find another job.

We, in end of life care, are reminded daily how precarious life is, how special it is. Find joy, peace of mind, and fulfillment daily. If you don’t find it in hospice then find it elsewhere.

Something more about... My Integrity Was Wounded Tonight...

My fellow nurses, you are on the front line of end of life care, and it is very challenging work. I thank you, along with hospice chaplains, social workers and volunteers for all that you do to educate and care for the dying. Please remember that You Need Care Too! I encourage you to watch Care For The Caregiver every six months or so with your team. Use the tools offered. Make yourself a priority.

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16 comments

Kaylie Millington

I appreciate the letter and response. It does cause deep contemplation. I feel for the nurse who obviously cares for the patient and takes her vow very seriously. I also appreciate your response and agree with it however, I would like to add a different perspective to consider; if I may.

My Uncle is a doctor and has specialized in Geriatrics for more than 30 years, I also have 4 nieces that are Hospice nurses and my best friend has been the Administrator and/or the Director of Nursing for multiple Hospice companies over the years although she has been with her current company for nearly 10 and has some ownership interest there. I mention this because I recently got into Hospice care myself but I have had years of stories, perspectives, and a variety of different opinions.

My response however, comes from my personal experiences. Both of my parents and my father-in-law died while on hospice over the span of 15 years. Three different companies and three different hospice teams. What I believe you and the nurse that wrote in failed to truly address is the family. The family knew our patients long before we came into the picture and will remain, here in this life, after the patient has passed. Their feelings and love for them run deep. There may be times that we educate, give our medical advice based on our experiences and knowledge but the family still doesn’t accept our input or advice. I don’t believe that is wrong; they may have a different perspective and we shouldn’t want them to live with regret or question themselves if anything would have been different. I do believe withdrawing their hospice care in order to force them to take our advice or lose coverage lacks concern and compassion for the families needs. You are also right to say that they could search it out and find another company to care for them the way they choose but is that stress, time, energy and frustration beneficial for the patient either…?? No, it is not. We all realize that stresses at this time is the last thing these people should have to deal with. If you believe the decision that a loved one is making is not what is best for the patient after you have given your advice, I believe as you said, lovingly do as the family requests. Continue to watch the patient for changes, point them out to the family, and continue to manage pain. Life in general is short but especially at this time. I can assure you the patient wants the family to be content as they go as well. Be understanding that what the family is trying to process and deal with will continue beyond the time you are with them. You will be appreciated more for your compassionate understanding than for your forceful advice.

I believe the nurse that wrote in believed that the doctor and hospice company based their decision on the profit but I would caution all of us to remember that there is ALWAYS at least two perspectives in every situation. In this case, consider the family may suffer longer than your patient.

Thank you

Colleen

Yes, troublesome. Good answer, however I may have told family “let’s take it day by day, if we observe symptoms of sob, terminal secretions, time to discontinue “ then do daily visits even 2x day . Sometimes when family see it’s making worse, will stop but perhaps grateful their opinion counted

Tricia

Wow… shame on the doctor. I relied heavily on the hospice workers for the most accurate, least painful way to help my husband while he was dying. Hospice care workers do that work EVERY DAY.

Doctors do what they do – and that is NOT hospice care.

After the last administration of hydration for my husband, I asked the important questions, like:
1. Is the swelling that occurred normal
2. Is this causing pain or ANY discomfort at all?
3. What is the best way to keep him comfortable.

My experience with doctors is to administer drugs until the patient is dead. NOT a good experience.

I’m with the hospice workers who make the better decisions than doctors any day of the week. True, any decisions affect the family, friends, clients – many you may not think would even care.

You don’t go to a dermatologist for heart surgery, So, Doctors… PLEASE allow the very caring, qualified hospice workers to do their jobs!

Craig Hayek MD

Hi Barbara and others. M.D. or nurse we are all in this together.

As medical director of 5 nursing homes it’s unfortunately a daily practice to have families literally over ride my orders with threats of complaints to anyone and everyone who will listen including litigation.

Its seems as though the majority of my patients are in acceptance, possibly still in negotiation, but the families are in between denial and anger and anyone and everyone who is available to yell at is a target.

I would love to share all 21 pages from a patients family member telling me step by step how I better do my job and demanding return phone calls to acknowledge receipt of same.

I have another patient whose daughter is a doctor and overrides my orders whenever she wants once again with threats of litigation. As everyone knows any litigation is not only costly and demoralizing but frequently the doctor will wind up forced to admit guilt and pay up or have it dragged out for years and years while eventually a jury made up of M.D. haters anyway will ream you anyway.

I have reserved myself to preaching the quality of life philosophy I believe in like the rest of us and quietly being the brunt of families anger, ironically at themselves.

Craig Hayek M.D. usnc1t@yahoo.com

Don

Dear Hospice Nurse, first, we cannot adequately express our appreciation for your deliberate choice of an occupation involving emotional, mental and physical challenges every day. Expert care of a loved one dying is a tremendous comfort to family and friends. Bless you for caring for others in such an extraordinary way.

Please allow me to speak to this very question of hydration when my beloved wife of 33 years was hours away from liftoff after battling breast cancer for three years. When we came to the point that my soulmate could no longer swallow, I talked to the Hospice Nurse. In her Advanced Medical Directives, my wife had said that she did not want to have food and water withheld. The Hospice Nurse said she could not be transported to the hospital for a feeding tube to be inserted, as that was surgery, and my wife was not in any condition for the trip or surgery. I asked if she could be hydrated, to attempt to honor her earlier wishes for care. The Nurse said yes, however it would likely cause her lungs to fill with liquid. They graciously complied, however, and the she told me what to listen for in her breathing, which would probably happen in a few hours. She showed me how to shut off the hydration system. About two hours later, I could hear the fluid in my wife’s breathing, shut off the hydration, and called the Hospice Nurse. Some would say that accommodation was unnecessary and counterproductive, but it gave me a clear conscience to say that I had attempted to honor my wife’s wishes. She had envisioned a possibly protracted period before death, and did not want to be without liquid. Eleven years later, I am deeply grateful for their entreating my request. I can’t say enough good things about Hospice. Though they were only in place with us for about a week, what they did was not only a comfort for my wife, but also for me and our kids and her Mother and brothers.

Thank you again for what you do to over and over to help people through a difficult and often confusing process.

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