Daphne has always been self-sufficient. She left her home in a small town in southwest Wales when she was 16 to study nursing at a children's TB hospital in the nearby village of St. Bride’s and later at the Royal Infirmary affiliated with Bristol University in England. During World War II, she nursed British soldiers who had been burned in battle and required plastic surgery.
She came to the U.S. in 1946 as a war bride and now, at 88, she is the matriarch of a large loving family that includes seven children, their spouses, six grandchildren and two great grandchildren.
Daphne’s husband used to tease her by quoting a phrase he remembered from his grammar school geography class, “The British are a hardy race.” And in her case it seems to be true.
Strong and healthy most of her life, over the last 10 years, she has had hip replacement, knee replacement, cataract surgery, and surgery to remove blood clots in her leg.
Each time, Daphne followed her doctors’ recommendations, did her physical therapy exercises, recovered completely and eventually resumed driving her younger friends to their doctors’ appointments, volunteering at a nursing home and traveling near and far.
And then came her most recent surgery—laparoscopic surgery to remove a large benign tumor in her colon—described by her surgeon as several small incisions in her abdomen, five to seven days in the hospital, a few months resting at home. She had been through far worse. Or so she thought.
Admission
Daphne is an excellent, well-organized patient. She read all the material given to her in advance and had brought along lists of medications/dosages, medical history, and names and phone numbers of her doctors.
The admission process also required her to complete several other forms (see Resources below for link to downloads):
- Healthcare Proxy or Durable Power of Attorney for Healthcare: Names person who will make decisions about your medical care if you are unable to do so
- Advance Medical Directive: Outlines type of care you will receive if you are unable to make decisions about your care
- Do Not Resuscitate Order (DNR): Stipulates that no efforts will be made to restart your heart after it has stopped
While she was prepared with medical information and had thought through her wishes in advance, Daphne was feeling nervous about the surgery and was grateful that one of her daughters, Diana, was with her to help fill out all the forms.
The First Night
All the qualities that make Daphne so lovable to so many—her gentleness and kindness, her go with the flow, press on regardless attitude and her stoical, never complaining nature—do not make her a good self-advocate.
She told the technician, who flicked at her arm trying to find a vein to start an intravenous line, that her skin was delicate and bruised easily. But she was not insistent as the technician continued flicking. Daphne’s skin broke and started bleeding. Later, when Daphne's family questioned the technician, she said she hadn't heard Daphne.
The Dreaded Prep
This hospital stay underscored how medicine is, at the same time, technologically sophisticated and crudely primitive. In the care of a world-renowned surgeon operating in a state of the art medical center, and still no better way to cleanse the colon than to drink a gallon jug of laxative and sit on the toilet pooping for more than four hours straight.
This first night also made evident the real world consequences of the nursing shortage and the absolute need for either a private duty nurse or family member or friend with a strong stomach. Except for an occasional pop-in by a nurse who asked “How are you doing?” Daphne and Diana were on their own. Well, almost, listening to a tape of Frank Sinatra signing Live in Paris circa 1962, helped make the ordeal bearable for them both.
The Surgery
Here is where the brilliant sophistication comes into play. A tumor, the size of a large orange, was removed by inserting a camera through a tiny incision in Daphne’s abdomen below her belly button and the surgical instruments through another small incision.
Because it is minimally invasive, laparoscopic surgery reduces patient discomfort, recovery time, and hospital stays and there is much less risk of complications, like infection, than with a large incision.
All went well and Daphne spent two days in post-surgical care before being transferred to a room.
There's Always Something
The first complication was irregular heartbeat. Daphne was seen by a cardiologist who prescribed a powerful drug known to cause serious side effects and she was transferred back to post-surgical care for observation for a few more days.
As is usual after gastrointestinal surgery, she had not had solid food or liquids for days and was fed intravenously while her colon healed. She said she felt weak and disoriented—which is often the case in hospitalized patients—and she did not want to be left alone.
Back in a semi-private room, Daphne’s family took turns staying with her and a few days after the irregular heartbeat episode, another daughter, Ellen, noticed that her breathing was labored. She called a nurse who came immediately and ordered a chest x-ray. Within a few hours, she was diagnosed with pneumonia and started on antibiotics.
Antibiotics are very effective in killing bacteria, both the organisms responsible for the infection as well as the normal bacteria that exist in our bodies and create a delicate balance of protection against infection. When these “good” bacteria are suppressed, other organisms like yeast can multiply rapidly and cause infection.
Daphne developed rashes all over her body and sores in her mouth. Her family requested that an oral specialist take a look and was told that treatment has been ordered already. Not the right treatment, however.
Daphne’s family was persistent and the problem was diagnosed and treated.
A few days later, Ellen was sitting reading while Daphne slept. She dropped something on the floor and when she bent over to pick it up, she noticed a puddle. The IV line had backed up and the antibiotics to treat the pneumonia were on the floor. Ellen alerted the nursing staff and the line was replaced. (Note: if you are a caregiver and need eyeglasses, good idea to wear them.)
The Nursing Shortage is Real
The nursing staff was in constant motion, literally running from one room to another, managing the care of very ill patients and the demands of their families. They epitomized grace under pressure, Daphne said. The nurses' aides were especially heroic and kind, especially given the type of care they were responsible for in a hospital wing devoted to patients recovering from gastrointestinal surgery. The residents also showed sensitivity as well as competence during their daily rounds.
How Families Can Help
Overall, Daphne received excellent medical care. Perhaps as important, she received steadfast emotional care and support from her family:
- They were vigilant about her treatment as well as changes in her physical and psychological condition and advocated on her behalf in a timely manner
- They worked together as a team and appointed one sibling to interact with their mother's surgeon and the nursing staff—which avoided confusion and promoted good communication
- They provided a loving, optimistic, and cheerful environment in which she could recover, including comfort food, music, photos, a grandchild’s drawing, laughter, and personal care items, like lotion, and a favorite mug and blanket
Four months later, Daphne is back to her normal routine and very grateful to her medical team and to her family. She sometimes remembers the view of the FDR Drive from her hospital room and can’t help but think how poetic it is that a nearby section of the highway was constructed from rubble of bombed buildings in Bristol, England, brought over as ballast on US ships. (See link below to BBC video.)
As a young nurse Daphne had survived many of those bombings never thinking that 66 years in the future, she would look out on the same stones laid out in a strong, straight path.
Resources
http://www.webmd.com/balance/features/taking-charge-of-your-hospital-stay
Download Your State's Advance Directives: http://caringinfo.org
How Bricks from Bristol Were Used to Build Part of New York. BBC News Video, 2017.
This is a generous and gentle guide to health care advocacy for loved ones and for oneself. No one practitioner or patient can find out everything that is helpful to patients working alone. The stories, websites and insights available on this blog are straightforward, practical, useful and offered in the spirit of teamwork and a shared, common and very human understanding. I know Mary and am a physician, so I would like to thank her for recognizing that doctors also face the ups and downs of life at work and at home. Congratulations on a fine blog. I think both health care providers and the lay public will be glad to discover it.
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