One increasingly important realization by healthcare professionals is the need to both engage and encourage patients to participate in their care. The following story of recovery and healing from double mastectomy surgery is told by Ev, a grandmother of nine, mother of three and wife to husband Will of 44 years. I asked Ev and Will to share their story because, I was fortunate to be included in Will’s weekly updates during and after Ev’s surgery. Each message not only gave reassurance to family members near and far that she was doing well, but ended with an inspirational blessing for all; the family’s faith first and foremost in Ev’s healing process. Their faith was a silent but strong part of the care team, and their strength as a couple was a beautiful testament of what teamwork and love can do for a marriage and the trials that life presents.
I include Ev’s words unedited, as she hopes they will help another breast cancer patient facing a similar surgery–to find answers to questions, insight to questions they may not know they have, and to find the same peace be it through faith, a loving caregiver or a skilled care team. Ev had all three–the trifecta of healing for her, and as a result, many, many happy people including her nine happy grandchildren, Ev’s daughters, and her partner in life, Will.
What do I do now? I was growing quiet impatient with follow-up doctor visits regarding questionable mammograms, ultra sound screenings, MRIs and biopsies during the 4 years since I was first diagnosed and treated for breast cancer. My husband, Will, and I were also seeing physical changes (dimpling and caving in of the skin) which was now occurring in the breast where lymphedema was prominent and seemed impossible to alleviate. I had gone to physical therapy and done exercises at home for two years. It didn’t work. The lymphatic system in the breast barely worked. The left breast tissue was ruined by radiation and very angry. My practical problem was regarding bras—being size E and weighing 148, I could barely tolerate wearing any bra I tried.
Dr. Moline, my original breast surgeon, said she could do nothing to fix the angry tissue except a mastectomy. She explained that it would be completely paid for by my existing insurance “to make the situation right” after cancer had struck. This was a big factor in my deciding whether or not to have a mastectomy. My oncologist advised me to have a double mastectomy to alleviate further testing of both breasts– “Nothing there, nothing to test.”
Dr. Moline gave me the names of three plastic surgeons. I choose the first and only one I visited. Dr. Williams was very clear, gave us several options, and sold my husband and me on the benefits of a double mastectomy with Tram Flap reconstruction of both breasts; this would all be done in one day during 10 hours of surgery. Dr. Moline would do the double mastectomy and Dr. Williams would do the Tram Flap with the help of her team.
Will was in total agreement. He was positive and started plotting what I might need for this huge surgery. We purchased a leather electric recliner not only for sitting but for sleeping the first week home. The electric mechanism was very helpful. Will purchased a hand-held shower hose with nozzle to fit in our shower and found a folding chair I could sit on for the first showers.
Our faith is very important to both of us so we relied on the Promises of God to make decisions, to live each day and not worry or loose the feeling of peace. Our family, neighbors, and church friends prayed, brought food, sent cards and flowers, (even new PJs), called and visited. Their sense was not of dismay or, “What are you doing?” Attitudes were positive and they seemed to believe and say, “You’ll get through this!” Three pastors visited us and read Psalms and assured us God was with us.
The day of surgery was a breeze for me. A hospital chaplain said a prayer for us before I went to surgery. Will was sent home and the hospital nurses and doctors called him every 2 hours with good updates. Our house is only 10 minutes away from the hospital so he was close. I remember seeing him about 8:30 pm. I was certain no surgery had been performed on me because I felt no pain or nausea. All I really felt was quite a bit of stiffness. I was checked every hour to make sure the blood vessels that had been moved were successfully reconnected and working to nourish the tissue that had been moved from my belly area to the breast area. I had nine drains. I was down to five drains when I left the hospital 5 days later. I lived on ice chips the first couple days, moved on to clear liquids, and ate a salad later on. I was able to get up and sit in a chair the third day. I remember moving myself that very short distance by myself; Will remembers it differently (he assisted). The nurse helped my attitude about getting up by saying, “The first time is the hardest, and after that it gets easier every time.” She was right. It did get easier. I walked slowly into the hospital bathroom and had a shower on day four. The nursing staff and doctors could not have been more professional. I tried to follow all the rules. I was a little bent forward for a couple days.
At home, Will removed all the smaller rugs on hardwood floors from the recliner to the bathroom. He had learned at the hospital from the nurses, how to empty, measure, and clean the drains. I had completely cleared my schedule and did nothing but rest, eat a bit, and sleep. Will was a remarkable nurse once again. He was willing and able to help me and brought his sense of “get it done” with a cheerful attitude. I was unable to keep track of my meds: Oxycodone for a few days, Ibuprofen 600 MG, and Acetaminophen, so Will took care of dosages and times. That was so helpful. Our closest friends and our family were updated daily with a quick sentence or two by email of my progress. Will was able to keep them informed and they appreciated a quick update. All the drains were removed by the end of the second week after surgery. The metal lanyard that held the drain bulbs against my belly was one of my only irritations. Metal is pretty hard. Do they make a plastic one?
I’m back doing most things except lifting much. I can’t lift my grandchildren but I can hold my 3 month old granddaughter. I can reach most things in my kitchen but found weeding last week a bit of a challenge. I have started taking my walks in the park where it is flat.
I am so delighted I had this big surgery. The chance for breast cancer is gone. A reduction in my breast size is also a huge blessing. A caring support group and husband not afraid to help with the recovery process make it all that much easier. I know for sure a top team of doctors can do successful surgery and make you comfortable, but God is the One who heals.
I attended the Patient Experience, Empathy and Innovation Summit hosted by the Cleveland Clinic in May. Sessions covered a wide range of topics, including insight into how technology such as wearables, apps, and greater access to information about patients is influencing the delivery of care, and with it, the experience of care by patients. At the end of the day it was clear, engaging with patients honestly and with empathy, and inviting them to participate in the care they are to receive will never go out of style. It is encouraging to see the renewed focus and importance placed on the power of what have long been viewed as the “soft skills” of medicine. There are many of us, including an increasing body of research, who understand the healing properties of touch, a smile or a kind word to help reframe a healthcare encounter. What truly made the content shared in Cleveland come to life, however, was viewing it all through the lens of a conversation I had with a close friend who recently went through treatment for breast cancer.
I am most happy to report that my friend is now almost two years cancer free. With a family history that is all too weighted in favor of a recurrence, she is taking each day as a gift while at the same time remaining vigilant of every new ache or pain. When she was first “discharged” from treatment last year, she expressed dismay at how quickly and easily her “care team” said goodbye and good luck. With no more follow up visits to an oncologist or surgeon, and no more chemo or radiation appointments to attend, she also had no one regularly monitoring a disease that had taken the life of both her sister and mother. With no one holding some type of medical authority to give her a reassuring touch on the arm, or an all-clear from regular blood work, she has been left to wonder what the future holds alone. And I was left to wonder how post-cancer care can be so lacking in empathy for a patient, a person, who just experienced one of life’s most challenging events.
In the last six months, my friend moved from the often cold, unfriendly confines of the Chicago area for the warm, inviting sunshine she had left five years prior. When she arrived back in her adopted home town, she also needed a follow-up surgery as a result of infection from her implant resting on radiated breast tissue after the double mastectomy she had opted for in hopes of beating her odds of recurrence. This immediately put her in contact with a new breast cancer care team–one I can talk about without quotation marks because she is giving them high marks. She loves her new hospital, surgeon and everyone she has had to work with to get through this next health and life milestone. When I asked her why the care was so much better in her new environment, she shared the following:
They just seem to care so much more. It’s as simple as the gowns. Here the gowns are warm, soft and pink. When I would go to put a gown on at the old place, is was scratchy, cold and old, barely covered me and often tied in knots. I would sit there trying to untie knots in the gowns and get frustrated.
The image of my friend sitting alone, uncovered, frightened of what her future holds, and struggling to untie these knots brought tears to my eyes. Someone easily could have been mindful of making sure the gowns were easy to put on and take off; that they brought comfort instead of more anguish. Admittedly, it is a challenge to turn healthcare culture around on a dime, but can’t we at least hit the mark with the simple things? Couldn’t we try to make the entire experience of care feel like putting on a warm, soft, pink gown, even if we struggle to fix bigger system’s issues?
As her care continues at the new facility, she is also learning more about the way health systems work because people who work within this system are taking time to talk with her, explain things and put her mind at ease. She also feels more comfortable and welcome within in the new system, and is asking more questions. For example, she learned that her oncologist back home was not necessarily ignoring her by sending in a mid-level practitioner to talk with her. In fact, it was a signal that her recovery was going well because she did not need the oncologist’s time. Wouldn’t it have been nice to know this as a patient in their care, versus wondering about the quality of care being received as well as one’s prognosis?
At a recent surgical follow-up visit, my friend’s new surgeon took time to explain the procedure he had performed in detail, describing what he had done and how he thought she was healing. Not only did he take time to talk science, he asked her how she was feeling, and told her “it was his pleasure” to be of service to her. He used phrases that real customer service focused industries use, and my friend picked up on this because she works in the hospitality industry and notices things like this. And she notices when the simple niceties of customer service are lacking.
Do you know who your patients are? If you haven’t asked, it might be a good idea because they have skills and they are paying attention. Maybe just these few patient engagement/experience tips could be bullet-pointed and handed out at white coat ceremonies, or posted in hospital break rooms across the country. I’m hoping my friend will choose to become a patient advocate at her new location, as she has much to offer. Her first agenda item is to become well, and perhaps then she will share the wealth of knowledge she has acquired over the last two years about good and bad healthcare delivery. And while the new system is far better in her experience, she still has experienced bumps in the road. There is so much patients can teach us about what we do well, and where we need to improve, but they need to be invited into a conversation. Start today by asking a patient how he or she is feeling, if there is anything they need. or if you can be of greater service.
Trying to get and keep the attention of busy healthcare professionals with content related to new initiatives can be a challenge to those leading culture change in healthcare. So many healthcare organizations are choosing the path of high reliability, greater patient engagement and shared decision-making, and a 5-star patient experience–all areas which will help us achieve zero preventable harm for patients. With the adoption of a new agenda comes the acquisition of new knowledge for all involved in executing and delivering on the programs. SolidLine Media has been a partner in developing award-winning healthcare content just south of ten years, and continues to hit the mark most recently with their Minute for Medicine series which includes (52), one-minute episodes containing quick, entertaining hits on several different domains key to providing the safest, highest quality care to patients. Knowing all too well the value a simple, turnkey solution can provide to so many looking to share information without having to start from scratch or develop it themselves is the driving force behind sharing this tool. And in the interest of full disclosure, I am a partner in the series.
Check out the following, or go to Minute for Medicine for more information on how to take part yourself! Share feedback on the series, and/or please share additional tools your teams have found effective in sharing and creating meaningful content within your healthcare organization! We don’t have time to recreate the wheel — it’s time to pick up the pace for patient safety!