I’m finessing a plenary session I’ll be doing in a few days titled, at the conference’s request, “How to Avoid a Terminal Hospitalization” (that’s The Option to Die in PEACE by another name). This one focuses like a laser on its topic, altho of necessity I’ll begin with as condensed a version as I can of my mom and dad’s hospitalized demises—those black days. Their remembrance is freshened because I re-read a pair of nursing journal editorials we submitted, first my sister Judy, then I in response. Mine contained reflections that were the genesis of Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization and this path. Her’s was a bleak recitation of the egregious litany that was my mom’s 3 week ICU stay.
This is not cathartic. The price I pay for doing this work is that stuff that ought properly rust and be laid to rest vibrates on.
Below is Judy’s letter.
I would like to share a story of a family whose elderly wife and mother died in an ICU. What I think is different about this story is the culture of care giving this family experienced over a period of two weeks. Then again, it might not be so different if it’s what your unit does.
I am telling you this because in this day and age of decreased staffing and overworked nurses, doctors and ancillary staff you may see yourself. If you do, I would like to challenge you to change your “culture of care.”
The adult children of this patient urgently flew to another state after a frantic and tearful call from their father about his wife’s sudden and critical condition. She was on life support and unresponsive. On a Friday, the son and daughter were on a plane in a whirlwind three hours. They arrived in another city at midnight and drove two hours to be with their father. The next morning they arrived at the hospital and expected to go right up to the ICU as the husband had done over the past several days. The children were desperately anxious to see their mother. It had been a year since their last visit and mom was fine just a few days before. Suddenly they were stopped inside the hospital’s entrance. They could not visit for another hour because it was “the season.” With the increased census, visiting rules had suddenly changed.
At 10:00am they stood at the ICU doors and were let in. The nurse said she did not have time to answer questions “because I have other patients,” she said. The doctor said to the daughter “I’m too busy to speak to you. I thought you’d be passing this information on to your family per my phone call this morning.” Then the patient’s nurse suddenly pressed the family for a DNR order. The husband cannot bring himself to do this. After all, they did not really know what caused this condition and the couple had been married almost sixty years.
Over the next week, this family experienced numerous episodes of poor communication and lapses in medical care. For example, the daughter touched her mother and noted how cold she was. “Well, we keep our patients cold,” the RN said. When it’s discovered the woman’s temperature is 94 degrees the staff flies into action correcting it. Equipment alarms are not answered for over fifteen minutes. The noise level is high and the bright overhead light is on 24 hours a day. The daughter questioned the doctor about how low her mom’s blood pressure is. Quickly he orders fluids and meds. “Why didn’t he notice,” she wondered fearfully. The children suggest the use of an air mattress because their mom is “too unstable to be turned”. She’s only 100lbs and diabetic. “Oh, that’s a good idea,” responded the doctor. At another time, the daughter requested endotracheal suctioning because of noticeable secretions in the ETT and coughing. The respiratory therapist at the bedside replied “I can’t stand at her bedside all day.” Sometimes staff comes to draw blood-work from the unresponsive but reactive woman but do not prepare her for painful procedures. The staff is told of their patient’s hearing disability but do not speak up. Or, they speak loudly over her bedside about her critical condition and her impending death. The hearing children are expected to pass on information to their father who is almost deaf, but neither slow nor stupid. It’s too time consuming to talk directly to him or answer his questions. He and the children are treated as if they are in the way.
On Monday, the children have a frank discussion with the hospital’s CNO. She listens intently and takes notes. She initiates a conference with the charge nurses and management, but nothing changes. The children are afraid to create too much fuss for fear they would be locked out of the unit and held to the 10 minute per hour visitation policy. The also want to shield their father.
The daughter speaks to several nurses and calmly requests she be able to help with some simple care giving. Just to hold a leg for bathing would have meant a lot since her mom was dying and her last visit was so long ago. This was denied. When anything was done to the patient the family was asked to leave or the screen pulled. The family was also requested not to touch or talk to the woman because her condition was unstable. The family was very compliant and content to simply sit at the bedside.
So, inconsistencies continued. Remember the air mattress? It was put under the patient but never turned on for 24 hours, even after a doctor at the bedside was questioned about it’s use. The family noted an IV bag labeled incorrectly but a nurse stated “oh, it’s the right solution but the wrong name.”
Then it was determined that the patient’s condition was hopeless and terminal. The pneumonia that had set in was irreversible. The husband finally had to face his wife’s impending death. Cessation of life support was agreed upon by the family. A morphine drip would be started and the patient weaned off the ventilator, the extubated. It was a heart wrenching decision. One of defeat, fear, hopelessness, sadness and disbelief
When the family returned that afternoon expecting to keep a vigil at their beloved’s bedside they found the woman still intubated and without the morphine drip. When the staff was questioned the family was told, “you had to sign a consent, the order hasn’t been written yet.”
Finally the morphine is hanging; being titrated up and the ventilator weaned down, then off. The woman is extubated. The family is told that death could take days. The plan for tomorrow is hospice care. The family goes home for the night giving instructions that if it’s at a reasonable hour and that it death is eminent they want to be called. The daughter wants to come back to be with her mom. Her brother has gone home to be with his family. It’’ 5:30pm. At 7:30pm visiting cousins call the daughter. “You’d better come back to the hospital, she not going to live much…” Then the phone goes dead. The daughter calls the unit to get more information, almost to be cut off with “call back, we’re in report.” “NO,” the adult child yells! After speaking to the RN the cousins’ story is NOT corroborated. However, the daughter has a gut feeling and drives back to the hospital. The husband is resigned in his own way to the inevitable and wants to stay home. As the daughter walks into the cubicle and catches sight of the monitor, she knows. Her mother’s heart rate is 40 and dropping. Her respiration’s cease. Finally, she is able to whisper loving words into her mother’s ear, to kiss her and touch her. Then she’s gone. At that minute, the daughter is a child, crying and grieving her loss of a lifetime of love.
At first no one comes; no nurse, no doctor. Surely they can see the flat line on their monitors. The alarms keep sounding in the silent room. Finally, a nurse appears but it’s the daughter who asks for some water, who asks what the procedure is now. The daughter must remember to call their private mortuary. The words of a security guard her brother has come to know echo in her ears.
When your mother dies have the mortuary pick up her body as soon as possible. “They don’t treat the bodies with respect in our morgue,” he has said.
I wanted to share this story to make us all think. To make us ask questions, to challenge ourselves to do better in our current climate of “do more with less.” You may be wondering how I came to know so much about this family’s experience. You see, I’ve been a nurse for 33 years. The woman was my mother, the daughter was me.
Here are some questions to think about your unit’s practice, and some suggestions for family centered care. This includes nurses, doctors and all ancillary staff that meet patients and their families.
1. What is the climate of care in your unit?
2. Do you have any written information/brochures for families that explain your policies, rules and visitation, and the reasons for them?
3. Is someone able to take time to answer questions and inform families about their loved one’s condition and plan of care? The plan of death?
4. Can the family be taken out of the unit for a care conference? Don’t talk over the patient’s bedside or in the hallway about end of life issues and decisions. Moreover, don’t talk to the family in the waiting room in front of others.
5. Do you have a chapel or a quiet room where families can go to be alone? Is there any place a family has for quiet reflection and to place life’s chaos into perspective? Is there a chaplain or rabbi on staff? Can someone be called?
6. If a family member has a disability such as a hearing loss respect them enough to speak facing them and make sure they hear and understand you.
7. Know your hospital and unit policies concerning equipment use. If a family member brings an error to your attention, don’t ignore them. Address the issue and correct it.
8. Take care of your families during life as well as death in your unit. Call the family for worsening conditions. Report be damned. Have someone available who can be with the family at the time of death. Ask yourself how you and your family like to be treated.