February 26 2019
Written By
Barbara Karnes
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My Personal Integrity Was Wounded Tonight

My Personal Integrity Was Wounded Tonight


Sue - April 20 2019

I was in a situation where the patient had become hospice and went home. The family rescinded hospice and brought the patient to a different hospital (where I also work) and insisted on everything, including a blood transfusion! I spent exhaustive time talking to them about the treatment being for THEIR benefit and not for the patient’s benefit and that he was within days of dying. They insisted (absolute melt down) on the blood to keep him alive over the weekend. They were fine with him dying after the weekend because they had to get back to work on Monday (their words). Begrudgingly the patient got the blood. Part of the problem is the fact that insurances will continue to pay for treatment, where in other countries families incur the financial burden. I know if we passed the cost on to the family, they would think twice about the treatment. Sometimes families take longer to get to the acceptance phase of grief.

Valeria Morahan - March 05 2019


Good friends lost their Mum and Mother in Law. During Mum’s time in hospital she experienced hallucinations and much suffering. At some point the family agreed that no fluids or food be given to enable Mum to go. It turned out that a brother had insisted this be reversed and spent the next 4 weeks shoving food into the poor woman’s mouth and he harassed doctors till they connected her to fluids again.

It was a dreadful situation for staff and other family members as well.

Among many, many things thought about this brother at the time…what I took from it was that he just was not ready to say goodbye :(. He is also being treated for terminal melanoma. So in a sense I felt he was directing his lack of control for his situation by driving his mother’s care.

He is a pain in the backside but he is not a cruel person…he just could not manage. In situations like this an Enduring Guardianship where the majority decision is followed would be the goal. Always a situation where one individual will feel unfairly done by and unheard… is so hard to expect reasonable thinking at this time.

I applaud all nurses and doctors in these dreadful situations


Alexandra Maas - March 03 2019

This is the ever painful predicament between what you KNOW to be best and the PROCESS of accepting of familymembers. And that is sometimes quite an irrate process. We can only do so much in explaining what death is, what the process is like, what we can see happening and how we can accompany it with comfort and care, trying to interfear the least, when people are not in the state of “yes, death is near now” but still in “no, we don’t want our beloved dying”. It is so hard for some to understand that to love is to let go, to let Nature walk in and take who we want so dearly to stay with us. Especially if we have had no former experience or haven’t been educated before.
For a professional this is an extremely “unsatisfying” situation (by lack of another word) because in the essence our professionality is denied and devaluated. It hurts the patient, and indeed, it hurts us.

Barbara - March 01 2019

Hi Dr. Craig, thank you for your comments on my blog My Personal Integrity Was Wounded Tonight. I am pleased to post a knowledgeable physician’s perspective. So often we seek to find a place to put our anger and frustration and that place becomes the physician. So much comes back to education. Education of the community about how end of life requires different care than for those that are getting better. We need to start that education before a family is in the midst of the emotional crisis of a loved one dying. As I type this I have the feeling I am preaching to the choir. Blessings to you in the work you are doing. Barbara

Christi - March 01 2019

I am responding from the standpoint of a hospice/palliative care physician. I certainly appreciate the RN’s perspective and it is always important to understand the rolls of the entire hospice team and how they work together to best serve the patient. The RN writing the original question is distressed about her role in placing a SQ line, and is perhaps blaming the hospice medical director and insinuating that this was an inappropriate plan. I’m not sure this is fair. First of all, the scene she describes when she places the SQ line does not indicate that the patient is uncomfortable or suffering. So I would extrapolate from this that she isn’t volume overloaded and SQ fluids are likely not going to prolong her suffering or cause her much in the way of additional/distressing symptoms. And it is not out of the realm of possibility that gentle fluids (hypodermoclysis doesn’t run very fast) may actually provide some comfort. Secondly, the medical director had a “lengthy” conversation with the patient’s family member who insisted on the fluids. It sounds like the physician did her best to educate the family but ultimately had to reach a compromise. The alternative was to go to the hospital. Sometimes patients and families put us in a very difficult situation where the best we can do is choose the lesser of two evils. So if the patient had the option to stay home and receive hypodermoclysis in a comfortable environment with the ongoing support of hospice, this seems a reasonable alternative to calling an ambulance, getting jabbed with IVs and putting a dying patient through the horrors that can happen in a hospital. And thirdly, if she truly had that much distress about placing the SQ line, she should have called the medical director to discuss the plan further instead of being angry that she was asked to do something that, in hind sight, she was uncomfortable with. As a hospice physician, it is not my standard practice to give fluids to patients who are in their final hours/days, but there have been occasions where it has been a reasonable intervention to ease the distress of the family when I am certain it is not going to harm my patient. And in these cases, the plan has been to give small amounts of fluid and monitor the patient for a response, with a plan to DC fluids if there are overt signs of discomfort. Anyhoo…just wanted to weigh in from the perspective of the person who finds herself on the phone with the demanding family member, trying to find a plan that prioritizes my patient and accomplishes the most good for all parties.

Kaylie Millington - March 01 2019

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 - March 01 2019

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 - March 01 2019

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 - March 01 2019

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.

Don - March 01 2019

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.

Heather Arps - March 01 2019

Unfortunately, I have been in a situation similar to the one discussed in this blog posting. The doc I worked with in our rural medical clinic made decisions that I felt were counter to the hospice philosophy for many of his patients, showing a blatant disregard for the essence of what hospice means. In many of the cases that he managed, his choice of medications and delivery methods, as well as 02 use evidenced his lack of understanding about end of life care.
I knew I would be unsuccessful with an attempt to dialog with or educate him, he is very sure of his opinions. When the opportunity arose, I worked to help bring hospice to our area. This created an appropriate alternative choice for families looking for good medical management of a loved ones care.
As difficult and frustrating as these experiences were for me a some co-workers, I learned several valuable lessons. We support the choices people make, even when we disagree. We cannot change a family dynamic and in the end, there are many kinds of comfort to offer.
I think many regular medical doctors are uncomfortable with the dying process, despite all the work we do to educate. To let go control and ‘surrender’ is not part of their mind set.
It was in helping him care for his dying wife that I saw how much ego and fear can look alike sometimes.

Thank you,

Kathy Jackson - March 01 2019

Thank you for addressing this issue. When my husband was dying, a family member questioned if my husband was suffering because he was being given nothing. Even though it had been explained to me how the body takes time to shut down, he lived for a few days after all of the machines were removed and I began to question if I had made the right decision. Five years later, because of being questioned during a very stressful time, I still wondered from time to time about it. You have given me a great gift with this article.

Toni - March 01 2019

I find in my own practice I have to remember that I am just a teacher and guide. Much of what occurs in these types of decisions is that patients contract with his/her family and not ours . To maintain my integrity and balance I remember this and step away and allow that family to make their journey with their choices. I can only be the best I can be if I hold to that.

Ben Zoodsma - March 01 2019

Thank you for providing this valuable information. Before my wife passed away I couldn’t accept that no treatment was the best treatment. Her decline was so rapid that I didn’t believe that the end of Her life was as near as it was. After an ambulance trip to the hospital for IV fluids she hung on for a few more weeks but never fully regained consciousness. Looking back, I’m grateful that I had the opportunity to hold her hand for those last days but I may have only prolonged her suffering. The stern compassion needed for hospice care should never be put aside.

Suzy Stutz - March 01 2019

Thank you Barbara for your comments about hydration. I’m a case manager on an oncology floor. As a certified oncology nurse of almost 20 years I sometimes feel I’m losing my perspective about quality end of life care. When I explain the facts of comfort care and help families accept stopping tube feedings and IV fluids on their loved ones, I remember your rationale and thank God for the way your teachings come to my mind. It gives me confidence without defensiveness at a vulnerable time for the family. Thank you.

Beth Ammons - March 01 2019

This is an important topic.
I would request that doctors don’t get vilified as “part of the medical model.” We -doctors, nurses , sw, chaplins, aides and volunteers are a team. In the Hospice I work for, I take my responsibilities to the patients, families and the team very seriously. There is no question that we are put in difficult positions by the system as well as frightened or uneducated families and patients. The last thing we should be doing is trashing other team members. These issues will always come up, and if the team members cannot, or will not prioritize discussion between themselves about these difficulties and work to resolve them, they are doing themselves and those they serve a disservice.
Our service to others is only as good as our service to one another, our respect for our team and continued efforts to bring our best effort to each situation.

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