The Balancing Act of Caring for the Dying

Dear Barbara, I work at a hospital as an X-ray tech. I take routine chest
X-rays in the ICU every morning. Many elderly patients would be better dead. All I do is to add unnecessary pain every day.

It's hard to take care of extremely ill people, to see how their quality of life has deteriorated, to witness all the suffering, and to not have a voice in that care. I agree that there are a lot of people in our health care system who are suffering, and I often question why treatment is continuing, why comfort care is not being offered and given.

However, you and I, as employees in health care, are not there to give medical advice or tell the patient and their family what they should be doing or how they would be better off with comfort care. Our job is to support everyone in the decisions they have made about their medical care. Those decisions and plans of care are for the patient and their families to decide based on the input from their physician.

BUT it is the responsibility of the physician to advise the family of a realistic prognosis and discuss anticipated outcomes. Hospitals (and most of health care) are about fixing people, treatments, and cure. What the odds are of accomplishing a “cure”, or of the treatments being successful in returning a person to normal life activities, are often overrated, not said, or not even considered. Our healthcare system is about addressing diseases that people have. I would like to see it more about people that have diseases. If healthcare was more people-oriented I think suffering would be looked at differently.

It can be difficult when our job involves actions that are contrary to our personal beliefs, when we see what we believe is needless suffering and indignity and are powerless to change it. For healthcare professionals, it is often a balancing act to care for patients and then deal with the sense of futility that is triggered when they are doing their job. When or if that conflict becomes unbearable then it is time to look into another line of work. I know that sounds harsh, but what other choice is there?

Yes, we can carefully ask questions to our supervisors about procedures and the care given. We can use gentleness and compassion in performing procedures and treatment, but the bottom line is the work we are in involves pain and suffering. The work we are in is controlled by others.

I created a film and a booklet for professional caregivers who deal with end of life called Care for the Caregiver. You may want to watch the link on the website to see if this film might also give you ideas for self care. While the film is about taking care of yourself when working in the end of life arena, a lot of the information within it is applicable to many career choices. Like flight attendants tell us in the safety briefings on an airplane -- “put your oxygen masks on first so that you can help others,” I strongly believe we must take care of ourselves as health care professionals before we can help others. If we don’t, we won’t be able to continue in this line of work.

Something More About...  The Balancing Act of Caring for the Dying

Home health and hospice agencies often use my film (Care for the Caregiver) to support their team in the unique challenges they face each day. The whole staff watch the film together during the lunch hour and read the companion booklet You Need Care Too. The team then discusses how they can implement the suggestions made in the film and the booklet. The film is revisited every six months to a year as new team members of join the staff. 

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I work as a CNA in the ICU and I witness so much what I deem as “medical torture” . Even though i’m low on the totem pole and not as educated as a nurse or doctor I know when interventions will be fruitless. The frustrating part is that I can’t raise my voice and tell families the facts as they are. I plan on leaving in a couple years but I am grateful for the knowledge and perspective that working there has given me.
BK Books replied:
Hi Calysta, thank you for sharing. I know others have the same feelings. Find comfort in the gentle, thoughtful care you give. Let your care be a gift you give them. Blessings to you in the work you’re doing. Barbara

Elinor Bayse

All of this being said, I wish that hospitals and nursing care facilities would spend some time actually doing basic care of the patients. When my husband was in a skilled nursing facility, they left him in a wheelchair (he needed a Hoyer lift to get from bed to chair). He wanted to get back to bed, and was trying to do so himself. My daughter was alone with him in the room, put the light on, no one came. She screamed for help for a long time, no one came. Finally, a visitor from another resident checked to see what all the screaming was about, then went to get help. By this time, my husband was in such a position that he would have broken his neck if he scooted any further. This is only one of the incidents, and the most scary, of his stay there. The hospital was no better - let him lie in his perspiration, no attempt to turn him from side to side, ect. The day he died, I was talking to Palliative Care about bringing him home, and getting supplies to take care of him myself. (I had had a fall, broke a few vertebrae, and was finally healed enough to care for him at home).
BK Books replied:
I’m sorry to hear of the lack of care your husband received. I hope you talked with the Administration of both facilities. If we don’t speak to those in higher positions they will not know of the inadequate care that represents their facility or hospital. Blessings! Barbara

Laura Blevins

My mom passed away 15 days ago. I cannot even begin to describe the frustration I felt as I advocated for her wishes to be honored in the last two weeks of her life. She had a living will and durable power of attorney but at every turn, the medical professionals blocked her desire for comfort care. Finally, 11 days before she died, I was able to bully her way out of the hospital and back to her home where I had hospice care started. I tried to get comfort care for her four months prior to this. It was exhausting. I wish I could teach the medical professionals about granting an 89 year old woman her dignity and how important it is to follow her wishes. Mom did everything right. The system failed her.
BK Books replied:
Hi Laura, what happened to your mother happens way too often. Please talk with hospital administrators about your frustrations and difficulties. Give them the chance to provide better care for others in your situation and—- I’m sorry to say there are others. Blessings! Barbara


Dayna, I am so sorry you and your husband suffered for all those years. I saddens me that people in situations like yours are not offered emotional, mental and even spiritual support during such challenging times.
I hope you are receiving some grief support. Hospices offer bereavement groups and guidance even if you were not involved with hospice care before your loved one’s death. Please contact one of the hospices in your area.
My blessings and thoughts are with you. Barbara

Dayna Parkinson

My husband was waiting for a liver transplant. He was on the waiting list almost 5 years. The last 9 months of his life he suffered 16 separate hospitalizations, ICU stays, pneumonia, sepsis, etc… It wasn’t until he became inoperable from bouts of scar tissue that the issue of hospice/pallative care was brought up. I wanted his pain controlled as he was suffering greatly, he had 1 week to get his head around dying, no counseling, no grief help, he was told to keep fighting till, one week before his death. He was afraid, broken and in anguish with worry for my daughter and I. It was terrible. I can really relate to this writing. I had thought seriously about becoming a nurse, but after spending 9 months, literally living there and seeing what goes on behind the scenes, I’m not sure I could do it. All I ever wanted to do was bedside nurse since the age of 12. We need to comfort and help our love ones prepare and accept death, not die without any peace in there hearts. It hurts that my husband went out this way.

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