How my Mother’s Palliative Care Experience Made me a Better Nurse: Seven Lessons Learned
By Caroline Boaz MSN, RN, ACNS-BC, ACHPN
On a morning in July of 2010 my mother was waiting for her companion to arrive to take her grocery shopping. She had given up her car about a year previously because she rarely had the energy to go out and about anymore due to her advanced COPD. Mom was meticulous about keeping her house clean so this morning she decided to polish her dining table to a high shine.
She then sat at one of the chairs and put on fresh pair of white bobby socks. Mom always wore white bobby socks. It was then that she noticed one of the light bulbs in the chandelier above the table was burned out. She went to the pantry and got a new bulb and proceeded to get onto the polished table in her fresh bobbies.
Well, she may as well have gotten onto a Chicago city sidewalk in pumps in January. About ten minutes later her companion came in and found mom on the floor semi-conscious and gasping for air. She suffered a myocardial infarction and spent the next three weeks in the Coronary Care Unit.
At the time of my mom’s cardinal event, she was living in Phoenix Arizona, I was living in Wisconsin and my sister was in Southern California. I had been working in the field of hospice and palliative care for 15 years and was an Advanced Practice Nurse. I had two teenage children at home that I was home schooling and single-parenting. This new development was extremely inconvenient. Mom and I had discussed her wishes not long before this all happened.
I was to be her POA for all health care decisions and my sister would be the POA for finances. We had not completed the paperwork yet. I downloaded the Arizona Power of Attorney form and was at mom’s bedside three days later. In the meantime, my sister was able to get there the same day of the event and was managing all of the medical jargon as best she could. Paperwork was faxed my way and I was insistent that she be kept comfortable, off the ventilator and nothing invasive be done beyond placement of a stent.
I took advantage of the four hour flight to Phoenix by reading a book I had been meaning to get to for two years. It is titled “My Mother, Your Mother: Embracing ‘Slow Medicine’, the compassionate approach to caring for your aging loved ones” authored by Dr. Dennis McCullough. I wanted to do the best by my mom and I knew I would be facing decisions on her behalf that included acute medical interventions.
Would her life be extended by these interventions? Would they cause unnecessary suffering? Would they only serve to lengthen her death? Would my sister agree with the approaches that I felt were right? I really did not know my sister. She left home to have a Navy career when I was a kid and we went on to have very different and separate lives. I talked to her perhaps twice a year on the phone and saw her twice a decade. At the time I had no idea that she would become my mom’s best caregiver and my best friend. However that day, Dr. McCullough’s book gave me the confidence to face this sister I barely knew and to deal with the barrage of medical opinions that would confront me when I stepped into the CCU a few hours later.
When one is confronted with a situation such as this and one happens to be a nurse, it can be hard to wear the daughter hat and the nurse’s cap at the same time. The medical professionals would assume that I understood their jargon, their angle, and their goals. My sister assumed the same. In fact she counted on it.
Lesson One: The daughter who happens to be a nurse is a daughter first.
When you encounter a family member that is a health care professional, keep in mind that they are first, a person with a particular relationship with the patient. As a daughter, I could not always be as objective as a nurse might be. My emotions and fears prevented me from recalling what a normal sodium level should be and why the bed rails are padded when restoring a low sodium level.
At times I regretted informing the medical team of my resume’ but overall I am very grateful that I had knowledge of palliative medicine. I was able to direct my very ill mother’s care in a way that added to the quality of her life without prolonging her death.
Lesson Two: If you are not familiar with the fundamentals of palliative care, learn more about it.
You will use this knowledge in your personal life as well as professionally to guide the best care possible. My mother suffered with delirium within three days of being placed in the CCU. She would refer to it as “The time I was off my rocker.” Later she would have no recollection of any of her time in the hospital. In fact, we showed her a photo of herself in the CCU enjoying a visit with my nephew and his wife. She said, “Who is that old lady?”
After discharge from the hospital she went to a lovely rehabilitation facility. My sister and I were shocked by her uncooperative and downright mean nature. Our gregarious and kind mother was the raving witch people dreaded dealing with. She refused to go to therapy and kept calling us to take her home. She was newly dependent on continuous oxygen, she wanted her cigarettes NOW, and she was so weak and dyspneic she could not even toilet herself.
Lesson Three: Do not forget the caregivers!
Out-of-state families are incredibly stressed and need considerable guidance in getting resources for long-term placement for their loved-one. Automatically refer them to social services and offer them lists of local resources. And yes, they still love that mean old lady that will not stop complaining and need to know that you will continue to provide compassionate care to their family member.
My next trip to Phoenix was in August. Have you ever been to Phoenix in August? Some places are just not compatible with life. How do people function in 117 degrees? My sister and I stayed in mom’s yellowed, cigarette-scented-everything apartment and began touring assisted living facilities that accepted Medicaid and had a hospice waiver, since we knew which way things were going.
We also packed up her entire apartment and had an auction house that was recommended to us come and take all of her possessions. Mom had no money but she sure had a lot of stuff. The best thing that happened at his juncture was lesson four.
Lesson Four: If possible, connect the family with a geriatric case manager or a palliative care trained social worker that knows well the system and the area where they will be moving the family member.
Suggest that they tour the several home that are recommended, do all of the preliminary interviewing and narrow it down to two or three places. Then take their loved one to the two or three places they have selected and let them chose. They will be much more accepting of this intervention if they feel they had a voice in the choice.
We kept mom in the loop on the packing of her things. We asked her what things she was really attached to. If it couldn’t go with her, one of us agreed to keep it “In case she got well enough to live on her own,” which we knew was not going to happen.
Lesson Five: Do not take away the ill person’s hope; even if they are clearly dying.
We knew mom would never return to independent living. She knew it too but at this point she had already lost so much that we could not take away another thing. Truth telling is important but one thing I know from my years at the bedside of the seriously ill is that they can only take in so much at a time. There is an art and a skill to communication at end of life. Learn more about it and practice it every chance you get.
Though her prognosis was probably a year we were able to get her on hospice because she met criteria, technically speaking. Dying and death were never taboo topics in our family. Funerals were raucous drinking events growing up Irish Catholic in Chicago. We brought mom balloons the day she signed onto hospice saying sweet sentiments such as “We will miss you” and “Bon Voyage.” That same week my sister and I went and made cremation arrangements.
We laughed heartily when the office of the funeral service was at a place called “Green Acres.” We had to sing the verse of course and then my sister asked if we could get a discount on the cremation since mom already cooked the inside.
Lesson Six: Keep a sense of humor and encourage your patients and families to do the same.
Encourage them to share funny stories. Give them permission to laugh. Mom lived sixteen months more after that. She had the typical trajectory of an end-stage COPD patient. Respiratory viruses quickly became pneumonia. We let mom chose if she wanted to take and antibiotic and she always said yes. Her morphine caused her terrible constipation that she was too weak to deal with and she ended up in the inpatient hospice center on three occasions. There were weeks where she rallied and could do everything for herself except shower.
The hospice nearly de-certified her three times but she always had a setback. Through all of this though was her palliative care team; vigilantly teaching the loving caregivers at the assisted living facility how to medicate and when to call for help. Mom made new friends among her peers at the home.
She also found her way back to her Catholic roots during this time and did a lot of spiritual healing, thanks to The School Sisters of Notre Dame who visited her every Sunday. While I could only visit every few months, my sister came for four- day weekends once a month and on all holidays. She took her out for tacos and haircuts and tried to remember to take off her oxygen when mom went out for a smoke.
In retrospect, my mom’s final year was probably the warmest, kindest and most fulfilling year of her elder life.
Lesson Seven: We do not know what gifts will come from accompanying our loved one through their final months. Palliative care provides that extra layer of support so that the patient and family can focus on living as fully as possible until the last breath is taken. As Saint Catherine of Siena said, “…all the way to heaven, is heaven”.
How knowledgeable are you about palliative care nursing? What is your comfort level in working with patients and families that are seriously ill? Here are some courses to help you become the best health care provider you can be:
Caroline Boaz Caroline Boaz MSN, RN, ACNS-BC, ACHPN is an associate director at The California State University Shiley Institute for Palliative Care. She came to the Institute from San Diego Hospice and the Institute for Palliative Medicine (SDHIPM) where she held positions as Executive Director of Inpatient Services and as Executive Director of The Center for Education, Quality and Research. Caroline had her basic nursing education at Northern Illinois University and earned her Master’s Degree in Nursing (MSN) from Alverno College in Milwaukee.