This is the first of a series of articles on how engaged bedside advocates can help their loved one navigate the complexity of cancer care in the hospital and beyond. These articles contain parts of my forthcoming book Becoming a Bedside Advocate: Insight and Information to Help Your Loved One Through the Modern Healthcare Experience.
The bedside advocate is a family member or a friend who is constantly at the bedside during and after hospitalization, and is an integral part of patient care and recovery. There is no substitute for the bond that families and lifelong friends have with their loved ones. With those years of intimate knowledge about the patient comes valuable insight that cannot be gained in brief encounters with medical professionals in a hospital setting.
The ability to serve another, to give protection and comfort to a loved one in need, is deeply within all of us. An engaged bedside advocate has an important role to play. Perhaps surprisingly, however, bedside advocates are not always seen as helpful by hospital physicians, surgeons, and nurses.
In 2018, my husband of 32 years, Rick Norris, died of acute respiratory failure resulting from esophageal cancer. For us, Rick’s health crisis came out of the blue. Our family was caught off guard. We were unequipped for the experiences to come. There was no support system or guidebook to prepare us for our role as bedside advocates.
When I began to write a book about this experience, I interviewed hospital professionals, who are doing their very best, but at times there was an undercurrent of “us versus them,” or even disdain in conversations about advocates. Some clinicians may even dread when family members are described as “advocates,” wondering if they are going to be a drain on the medical care team.
I believe that physicians, nurses, physical therapists, hospice caregivers, and loved ones will all do better when the bedside advocate is welcomed into the patient care realm. This invitation, however, must be earned by the advocate. We can become well-informed assets working in partnership with medical teams for the sake of the people we love.
Bedside advocates are the underestimated, underutilized asset in the hospital room, alongside the patient. Yet we are mostly unprepared to be as helpful as we could be.
What Happened to Rick
We were living in New Jersey, a happy, fortunate life, but with our share of challenges and hard work. In May 2016, after our daughter’s wedding in North Carolina, we spent a weekend in Palmetto Bluff, South Carolina, an exquisite destination in South Carolina’s low country by the May River, which is home to waterfowl and alligators, wild game, bald eagles, bluebirds, and magical dolphins.
On one sparkling day we drove through the town of Bluffton and the spell was cast; we fell in love with South Carolina. By Labor Day weekend, we had signed a 2-year lease on a house within walking distance of the river, with a sense of adventure.
The stay there felt like a vacation. We threw open the doors at night to enjoy the fresh air. It was like “sleeping in a huge treehouse,” we whispered to one another at night. It was a treat to be able to walk down to the serene, graceful May River to watch the dolphins and waterfowl.
Rick started fishing a little off the dock and casting the net for shrimp, with encouragement from our neighbor Stan. He delighted in riding bikes, swimming, kayaking, and oyster roasts. We agreed it was time to begin looking for a small retirement home to buy, blissfully ignorant of what was to come.
A year later, in November 2017, I was having my annual physical, and Rick sat in the waiting room, bored. He picked up a pamphlet that said if you’re of a certain age, were ever a smoker, and have a history of melanoma, you should have a CT scan. So, pamphlet in hand, Rick walked into our doctor’s office and set an appointment.
The CT scan showed a mass in his upper-right lung. Our physician ordered a PET scan, which showed the mass in the right lung was benign, but something else was seen in the esophagus. His gastroenterologist scheduled an endoscopy to look at the esophagus, and a biopsy. Rick had had decades of indigestion, but nothing bad enough to warrant more than prescribing a medication.
The diagnosis was stage IIIA distal esophageal adenocarcinoma. No symptoms. No warning. According to the oncologist, we “lucked out.” Another 6 months and it would probably have been stage IV (metastatic), at which point he would have been “kept comfortable.” But now he was a candidate for treatment.
The doctors recommended radiation and chemotherapy for 6 weeks, then esophagectomy, a major surgery to remove the esophagus and part of the stomach. Esophagus cancer treatment and surgery are brutal, we were told. We were slightly paralyzed. But, with the help of physicians and friends, we found a good hospital for Rick’s surgery. Thomas A. D’Amico, MD, Chief of Thoracic Surgery at Duke University Hospital, came highly recommended as a surgeon and “a gentleman.”
Duke Medical Center in Durham, North Carolina, is only a 30-minute drive from the home of our daughter Kelly and her husband, Stephen. We were counseled that it was important to have local family support.
On March 20, 2018, we drove to Durham and met Dr. D’Amico and his physician assistant. We asked a few questions, but we really did not know what to ask. “How is pain managed?” Rick asked. “No problem,” we were assured. “There is a pain management team. We know how to handle it. Expect discomfort, yes, but pain we can handle.”
We braced ourselves for what we expected to be a difficult surgery and a 3-week hospital stay. The surgery was on April 16, 2018. Rick was critically ill and was in the ICU for 8 weeks. After 11 weeks, he was discharged to Encompass Health Rehabilitation Hospital of Bluffton, South Carolina, for another 3 weeks. There he received excellent rehabilitation care to restore his body.
Finally, he returned home after nearly a 14-week hospitalization in all. And once home, he received continuous home care by an array of nurses, physical therapists, occupational therapists, speech therapists, and custodial professionals.
Rick recovered enough to have almost 3 months at home. On September 26, 2018, he victoriously made the short walk to the neighborhood dock and at last enjoyed the beautiful May River he loved so much. He’d spoken of his return during the worst of times, half delirious in the hospital. “I want to go home; I want to walk down to the dock. When I get home, we’re going to stop working and enjoy life more.”
Every Ounce of His Will
Then, in early October 2018, he began to have episodes of pneumonia with constant visits to the emergency department and local hospitalizations. He lost about 50 pounds and couldn’t keep foods or liquids down. He began to look emaciated, had constant respiratory failure, bedsore wounds, and weakness.
We were blessed to have good medical care, home nursing, physical therapy, and loving support from neighbors and friends, but he was getting worse. I reached out to our Duke surgeons in desperation, who recommended that Rick come back to find the reasons for these complications.
In the midst of all this, our lease was due to run out on November 1, and the homeowners declined our request to extend the lease. Saying it was “now or never,” Rick insisted that we try to buy a small home in the community we loved. It gave him a sense of well-being to be able to retire there.
Within about a week, we closed on a small house, trusted a local company to move our belongings, left with boxes stacked all over the new house, and drove the 5 hours to the hospital at Duke. Rick was admitted on November 9 and sent home a week later. His surgery had healed nicely: the constant aspiration of digestive fluids into the lungs caused the pneumonia. We were on our own.
Rick’s final hospitalization was from December 6 to December 13, 2018, in nearby Savannah Memorial Hospital, where after 3 days in the emergency department, an ICU room opened. Then he moved from the ICU to a step-down unit, where his respiratory failure could not be controlled. (A step-down unit is a hospital nursing unit providing care intermediately between an ICU stay and a normally staffed inpatient division.)
He was more emaciated, calling out my name, occasionally reaching up with trembling arms extended to someone we couldn’t see. He fought to live. The doctors and nurses were compassionate but couldn’t help him. He was dying, and aggressive measures to keep him alive were contrary to his end-of-life wishes and would have been inhumane. Then to hospice.
He mercifully passed on December 13, 2018, on Savannah Memorial Hospital’s hospice floor. He was in hospice less than 24 hours.
Like many others, my husband used every ounce of his will and strength to try to stay with us. It was heart-wrenching to witness. It brought our family and friends closer together.
Being a Bedside Advocate
When the ordeal of Rick’s critical illness burst into our life, I knew zero about what to expect or how to protect and advocate for my husband. We had no idea how to navigate a hospital ICU or step-down units, rehabilitation, home care, critical emergency department visits, or hospice.
I had no notion how important nurses were, and how to engage with the swirl of hospital medical care teams. No true understanding of what ICU delirium was, and how troubling it could be to witness. No notion of the discharge process, and how to advocate for the best discharge scenario. No understanding of hospice as a care option. Throughout this yearlong experience, I stumbled around and learned a great deal about what a bedside advocate could do.
My goal is to help others understand that this relationship can be harmonious and beneficial to all—patients, families, and professionals. The role of a bedside advocate is an important part of healthcare, and I aim to humanize it by sharing lessons learned, insight, and perspectives from the medical care team.
In my next articles, I will share what I have learned about being a bedside advocate.