The MS Society Christmas Concert at St Paul’s Cathedral last night was very slick and uplifting. The concert is part of their ambitious Stop-MS campaign to raise £100M over 10 years for MS Research.
The concert was layered around several Christmas stories written by Abi Morgan about people living with MS. Abi is a very successful play and screen writer. All the stories were read by professional actors, who were stunningly good at bring out the emotion in each story. My only complaint is that the stories were slightly sugar coated, or may be marzipan-coated a more appropriate term for Christmas. Dare I say the stories represented a ‘rose-tinted’ view of what Christmas is like for people living with MS.
I am currently on day 3 of a teaching course we run to teach people about MS. Yesterday, Dr Clarence Liu, our neurorehabilitation expert, was unable to give his talk, which I delivered on his behalf. One of the cases of his I presented represents the under-belly of MS; neglected MS.
- 61 year-old man
- 25 years of progressive MS
- Bed bound. Doubly incontinent, 2x chest infections & 3x urine infections last year
- Lives alone in 2-storey house, regular visits from children & ex-wife
- Adamant he wants to remain in his house
- Cachectic, deep sacral pressure sore
- Cognitively impaired
- Dysarthric & dysphagic
- Severe contractures in limbs with spasticity
- Complaining of discomfort in bed
- Unable to stand
- Dependant on others for all activities of daily living
- No leisure activities
- Lives in the front room of his house “micro-environment”
I wonder what kind of Christmas this gentleman is going to have? May be I am wrong in forcing you to think about people with neglected MS this Christmas?
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Interestingly, I read a deeply moving account of a neglected patient with breast cancer in this week’s NEJM. You can easily do a search and replace substituting ‘breast cancer’ with ‘multiple sclerosis’ and the messages will be the same. How do we as a society lift ourselves up and not forget the neglected people with disease? How do we improve our health and social services to make sure these people are found and looked after better?
Jennifer Lycette. Neglected — Cancer Care and Mental Health in Rural America. N Engl J Med 2016; 375:2220-2221.
…. My first thought, as I viewed the CT images, was a somewhat fantastic notion that the tumor on the monitor screen could not possibly be real. It obliterated not just the area where the breast should have been but most of the chest wall….
….. Even in the United States, such a presentation is a common enough occurrence that any first-year oncology fellow can tell you its name: “neglected breast cancer,” a name that implies that the woman has neglected to take proper action to treat the cancer.
….. The minute I walked through the patient’s door, I knew: the pressured speech and tangential associations of bipolar disorder hit me with concussive force….
…… One of these melodies was familiar: at first, the patient had not believed it could be cancer, although she’d acknowledged the possibility. She’d had a plan to use various alternative therapies and to eventually have a biopsy if they hadn’t worked; she thought the fact that the therapies weren’t working meant that it must actually be an infection……
…… A second melody told the story of the terror she’d experienced as a very young child witnessing a relative’s cancer treatment and its effects, including hair loss. She feared having similar treatments forced on her. Her appearance was important to her. I noticed that despite being in the hospital, she had taken the time to apply makeup. She wore bright red lipstick, but the color spilled over the edges of her lips, as if a child had colored outside the lines. I later realized she must have had to apply it with her nondominant left hand — she’d lost the function of her right arm because the tumor had destroyed the brachial plexus…..
…… Her family had their own refrain to share, describing a loving mother and a vibrant member of the community. Her grown children were now raising young children of their own. Only in recent years had they started observing unusual behaviors. Eventually, out of love and concern, they’d had her involuntarily committed for a psychiatric evaluation. She’d felt betrayed by her family, and they continued to feel horrible guilt over that decision. She had read extensively about patients’ rights so that she would never again be hospitalized against her will…..
….. She continued to refuse to allow any health care or hospice staff into her home. I prescribed comfort medications, but she would rarely let her family administer them. When the exhausted family could cope no longer, out of desperation they brought her to the hospital. When I went to see her, she was sleeping comfortably, having finally accepted pain medication. I felt undeserving of the hugs her family gave me. She died peacefully 2 days later……
….. Her death left me with feelings of profound failure. What good were targeted therapies when her coexisting mental illness prevented her from taking them? And I had been unable to palliate her suffering until her very last days of life. Oncologists don’t just prescribe chemotherapy — a large part of our practice involves caring for people at the end of life. I could not provide that care because I lacked the tools and training to overcome the barrier of mental illness…..
…. Before my patient died, her family had told me that they hadn’t found out about the tumor in her breast until they asked one day about the strange bulge beneath her shirt. They hadn’t realized how advanced her disease was until the day I first met her in the hospital. They asked me what the outcome would have been if she had not hidden it from them and had sought care earlier…
….. I was tempted to answer this question academically, telling them about success rates of the latest neoadjuvant four-drug combination regimens, outlining a typical course of neoadjuvant chemotherapy, surgery, adjuvant radiation therapy, and 1 year of adjuvant trastuzumab. But I imagined the patient coming to me in a fictional past at an earlier stage of disease. Without treatment of her mental illness, she would have been extremely unlikely to agree to, let alone complete, such a course of therapy. She might have had surgery if she had presented when the cancer was at an operable stage, but she might not have agreed to that either. And regardless, without a full course of adjuvant therapy for the high-risk, HER2-positive, ER-negative tumor, within months to years she would inevitably have had metastatic disease…..
….. So instead, I found myself gently answering, “The same. I think it would have been the same.”……
…… The family nodded in agreement, saying that’s what they thought, too — that in the end, the cancer was but the saddest final chapter in the devastating story of untreated mental illness, the true neglect……