living your best to the end

Screen Shot 2015-03-19 at 11.15.48 AMComfort Care and Quality of Life

What does Quality of Life mean for you? For a 98 year old, nearly blind, and unable to pee without a ‘stent’ in place, it’s being comfortably positioned in the warmth of her garden, with tissues and a cup of tea within reach.  A proud woman, she doesn’t like calling her health aids ‘caregivers’ because it makes her sound needy. Instead, they’re companions and a chauffeur.

What does ‘Comfort’ mean to you? Sometimes comfort comes of small pleasures: a loving touch, soothing music. For the 80-year old wheelchair bound man, it’s stroking his cat and getting his feet massaged.

Comfort can take on a different meaning as life winds down: shortness of breath, skincare, dry mouth, constipation along with pain and anxiety. Ensuring these needs are known, and are met, can make the difference to both patient and caregiver.

Things I’ve learned from dying

Living, knowing you are going to die Drawn, as I am, to learning ever more about how we die, and how ‘one’ dies, this David Dow title, “Things I’ve learned from Dying ” had me at ‘hello’ Dow – who is very much alive – is a death row lawyer in Texas . He writes beautifully about, and pours insight into the humanity of those on the row. But that’s not why I found his book so important and compelling: it’s the parallel story that I fastened on: Dow’s story of Peter – his father in law –  who died within a year of diagnosis. Throughout the sickness, its treatment and decisions about, Peter shares with Dow some light, along with the darkness of regrets, disappointments, conflicts and depression, and self-awareness. These emotions and reactions along the journey, tell an eternal story: Not wanting to lose a loved one, perhaps at the cost of the loved one’s quality of life As Peter says: “You all want me to stay alive, but that is because you want me to be in your lives. Of course that flatters me, and makes me happy and sad, but that desire does not give you a ballot, and even if it did, it is wrong to cast a vote that treats me as a means to your ends. I want to die with dignity, and you are all determined to thwart me.“ Peter is the loved one, torn between his own needs and those of his family: “For [daughter] Katya, either I am here or I am not. For me the line is elusive....

Pain as a Cause of Agitated Delirium

“Can’t you do something about her pain?” An 85-year-old woman with multiple medical problems, including dementia, coronary artery disease, renal insufficiency, and peripheral vascular disease, was admitted to our hospital with urosepsis. Her hospital course was complicated by the development of dry gangrene of her left foot, Candida sepsis, Clostridium difficile enterocolitis, and multiple deep sacral and trochanteric pressure ulcers. When housestaff asked her son if he wanted us “to do everything,” he always answered yes. She was able to be weaned from the ventilator and was transferred to a medical unit for continued treatment of hospital-acquired C difficile enterocolitis and wound care of her multiple stage 4 ulcers. She underwent 4 surgical debridements under general anesthesia in the operating room over a several-month period but remained persistently febrile despite continuous treatment with broad spectrum antibiotics. The patient was withdrawn, tense, and turned toward the wall in a fetal position, but she screamed and cried out for her mother, moaned in pain, and tried to hit and strike out at the nurses when they performed her twice-daily dressing changes. She refused all efforts to feed her or offers of sips of fluid and received all nourishment and hydration through her feeding tube. She did not respond to the voice or touch of her son or grandsons when they visited. On day 63 of her hospitalization, a palliative care consultation was requested by the nurse manager on the floor because of nursing staff distress about their perception of having to hurt the patient during dressing changes. With the agreement of the attending physician, who had refused to give medication, on...

Music Therapy: Unlocking the soul

Music has charms they say.. (Joe Jackson: ‘Slow Song’) Amy Clements-Cortes For Amy Clements-Cortes, PhD, MusM, MTA, the charm of music is its ability to accomplish a multitude of health and wellness goals.One of Amy’s areas of specialty is end of life music therapy and specifically using music to help clients complete relationships. “When we complete relationships in our lives, there are key sentiments that need to be expressed to help us accomplish these completions. “I Love You,” “I Forgive You,” “Forgive Me,” “Thank You,” and “Goodbye.” Music can unlock emotions and communication where memory loss or the ability to speak has become an issue. For example with dementia, Parkinson’s and Stroke survivors. “Music provides an outlet for expressions of grieving and loss as people come to the end of their lives. Music helps express feelings that are difficult to speak about such as Holocaust experiences.” Working with fellow health-care professionals such as those in speech/language therapy: “I can help augment the work clients are doing in speech therapy by engaging the client in vocalizing vowel sounds to music, so they can hear their own voices.” It’s not just any music that Amy uses: she makes it specific to the situation and the client, asking what music they liked, gently coaching with prompts such ‘what soothes you, what songs did your relative listen to when they were in their 20s?.’ With the populations Amy treats, this isn’t always possible. “It’s a bit of a fishing expedition I’ll research what music was popular in their day, or if they’re from another culture, will consult with musicians from that culture.” Amy...

MedicineX at Stanford U: all the elements of reality tv

Life with several chronic health conditions  For 3 days, I was surrounded by remarkable people whose litany of health issues and coping techniques had all the ingredients of a successful tv series: Courage, drama, humour, pathos, ethos, mystery, adventure, tragedy, fortitude, lateral thinking, creative thinking, tears, fears, bonding, loss, disappointment, triumph over adversity, love, hugs and hiding out as necessary. These stalwarts have diseases affecting every system in the body: Heart, lungs, liver, kidneys, immune, respiratory, digestive, musculoskeletal, amputation, brain. Many are also caring for a loved one with one or more serious health condition. Health care professionals lurked at every corner, and technology of all sorts is in evidence. Perhaps, reading this, you’d expect the series to take place in a retirement home, assisted living or nursing home. Not so. This amazing group was at Stanford University in Palo Alto California. The youngest attendee – Emily in her 20’s, who wrote a poignant blog, Letting people care for you. Not often easy and another lesson learned. MedicineX: Warmed the heart and the spirit It’s a conference designed around and for patients. A conference that aspires to change the way medicine is practiced and the way systems are designed; a conference that changes – for the better – relationships between patients and providers, and that promotes the concept, practice and benefits of patients helping patients. These desperately ill people are brought together by a determination to have control, and take control of their health and their lives and whilst on this journey to support each-other. This was evidenced several times. As an example, when one of the ePatients had...

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It’s not death, it’s dying that alarms me.

Michel de Montaigne