living your best to the end
Palliative Home Visits are the Future

Palliative Home Visits are the Future

“What I fear the most – what really terrifies me – is being short of breath and not being able to swallow.” So said the husband of his dying wife. This is terrifying to me, too, so I listened closely to the response given by Palliative Care  physician, Dr Sandy Buchman: “I can help with shortness of breath: there are medications that change the perception of that feeling of breathlessness. It doesn’t change the underlying cause, but I see patients whose breathing is still labored yet they say they’re now feeling fine. About swallowing: eventually, your wife will not be able to eat. That’s normal, and I can help both of you cope with that. “ I am in the privileged position of being invited to ‘ride’ with Dr Sandy Buchman on palliative house calls. Working at a teaching hospital, he often brings residents as part of their learning experience, but I am the only layperson to get this access. And what an experience it was: learning more about the palliative approach – to symptom management and to that all-important aspect of any meaningful interaction: communication. We decided my best introduction would be ‘educator’ and, although a bit apprehensive about intruding at a fraught time, I was universally welcomed. In a couple of the visits, I was able to employ ‘active listening’ with family members feeling comfortable enough with me to share insights that proved helpful. A range of palliative patient and family situations A B, 100 years old, on oxygen, was a renown pathologist; L.M., 88, bed-bound, the right side of his face paralyzed, was key economist to...

Death and doctors who don’t want to talk about it

What happens when patients want to talk about death, but their doctors don’t? My 94 year-old father-in-law was relieved and delighted when I brought forth the subject of medical directions, in the event he couldn’t speak for himself. My brother in law – a paramedic – brought a standard Do Not Resuscitate (DNR) form. Although written in largely incomprehensible language for a mere non health care professional, I took it upon myself to discuss more than just the decision to resuscitate – shocking his heart back to life. He was right on board with ‘no heroic measures’ – and even more adamant when he understood what ‘heroic’ and ‘measures’ meant in the context of his quality of life.This form required signature from a doctor, so he brought it to his next regular visit to his long-time family doctor. His doctor was aghast. “Who put you up to this? I’m not going to sign this. I don’t think this is what you’d want.” What?! Not an isolated incident, as I’ve discovered. I’ve been conducting informal interviews with healthcare professionals of all stripes about their reaction to not initiating or discontinuing life-prolonging interventions. This includes supplemental feeding (Feeding Tubes) breathing (ventilators and tracheostomies) and dialysis. It’s as if you’ve asked them to condone murder. It’s as if you’ve asked them what they’d want for themselves.. Often these are the same healthcare professionals who purport to want to follow patients wishes, but who try to talk their patients out of their wishes. “If I do that, you know what it will lead to.” Well, yes. It’ll lead to the death, but possibly...

Grief and relief: tradition, culture and religion

In this fast-forward world, it can seem that grief should have a ‘best before’ date. It can be uncomfortable – for those grieving and those around. Grief can also be exhausting and stressful and relentless. Considering few of us are spared the knife-cut that comes with the sorrow of loss, there are time-honoured rituals and traditions that help on the road to softening suffering. Christian For Christians, a wake includes visitation – seeing the body – and, after the funteral, gathering to pray for and celebrate the life of the deceased. From: The Light Beyond Jewish In the Jewish tradition “Sitting Shiva’ is 7 days of mourning during which time the bereaved is (are) never alone: Our sages allocate days one through three for crying, and days four through seven for eulogizing. After that, one does not mourn excessively, but follows a grieving process that gradually diminishes. Ideally all of the direct mourners sit shiva in the house of the deceased, for it says, “Where a person lived, there does his spirit continue to dwell.” Thus the presence of the person who has passed away is strongest in his own home From: Chabad.org Indigenous There are  many pre-death rituals to help the the dying on their journey and also to help those left behind:. It was very touching to see that at the end of the funeral where the burial.. the sun dance drum ent to sing that last song for her. I’ts calld the Traveller’s SSong.. it’s a beautifl son, a beautiful song and it’s her journey back to the spirit world I think [that kind of ]...

Comfort: How important is it to you at life’s end?

For many – perhaps most – suffering is the biggest worry about life’s end. Suffering doesn’t start and end with pain management. It includes peace of mind and comfort – both of which are highly individual, and can hold the keys to perception of and requirements for a ‘good death’: What comforts you, or what brings you comfort? What are your small pleasures, or what gives you pleasure?  What brings you peace of mind? Comfort and feeling good about herself is the gift a palliative doctor gave to a terminally ill patient who wanted no further medical treatment. He simply asked: “What would make this a good day for you?” “If I could sing” The patient, Dolly Baker (nee Thelma Botelho), was once a renowned songstress.  And sing she did. I have sat in countless meetings, workshops, think tanks, round-tables where everything but the word, comfort is used to help us on the way to as good a death as possible. Amongst the questions commonly asked: What are your values? What are your beliefs? What’s important to you? What are your goals of care? These may may all play into what makes us feel good,  and brings comfort, but these approaches often then require further probing and questioning which takes so much more of that precious thing that’s often in short supply: health care professionals time. Revealing answers, reveal simple solutions Answers about comfort reveal solutions that: often have nothing to do with medical interventions; can bring comfort and joy to attending healthcare professionals; can help family and friends support more purposefully and meaningfully; As a ‘layperson’ whose focus...

A new medical decision PATH for the frail elderly

Palliative and Therapeutic Harmonization: PATH In plain language PATH means an assessment and treatment recommendation that takes into account what’s going on with us as a whole person, rather than our specific parts.  A worthy goal for all of us, but with particular importance for those both elderly and frail, and who may have a dollop or more of confusion. Dr Laurie Mallery Dr Paige Moorhouse Dr. Laurie Mallery, head of the Division of Geriatric Medicine at Dalhousie University and Director of the Centre for Health Care of the Elderly at the QEII Health Sciences Centre in Halifax, Nova Scotia. and Dr Paige Moorhouse with her Masters in Public Health, also practicing at the QEII, are like-minded in their concerns for care of the frail elderly. Together,  these two good doctors took the initiative to research and develop a  framework for medical decisions related to the frail elderly. The result is PATH: Palliative and Therapeutic Harmonization. Says Mallery: “We spent many years, looking at all factors related to the frail elderly.  Drs Mallery and Moorhouse  practice and teach at the PATH Clinic . The approach has three parts: 1. Understanding “The frail elderly are often in and out and in and out of healthcare with many crises, assessed by many people – each of whom brings their own lens. There’s no  organizational plan to take this info and use it collectively and understand the significance, for example: is this person near end of life, and should we take that into account in discussing a medical procedure. Sometimes the patient seems frail but they really have a hearing impairment. 2. Clarity of...

Bringing Creativity into Clinical Practice with Older Adults.

It was a day of music, arts and drama, of passion and compassion, entitled, Bringing Creativity into Clinical Practice with older adults. Bringing creativity into a Clinic Day brought relief and hope to many working with Dementia and Alzheimer’s patients. The presentation was refreshingly unlike most clinical education and on breaks, we were greeted by a Drum Circle, lead by Terri Segal, Expressive Arts Therapist, Not just a demonstration, we were encouraged to pick up a percussion tool and join in. A combination exercise and mental health break. Another presenter – a psychiatrist –  showed photography assignments from nursing home residents, whose average age was 87, entitled: “A View of the World though the eyes of the Elderly: I’m 90 going on middle Age.” One of the photos – a self-portrait assignment – won first prize at an art show: it had been submitted anonymously and the winner surprised everyone when she wheeled over to accept. Robin Glazer, Director of the Creative Center: Arts in healthcare, in NYC was quick to point out that her ‘arts’ are not the same as Art Therapy. “There is no agenda here. It’s de-stressing and fun. We have excellent artists who are flexible and design their approach to the audience. For example, in a group of Japanese elders, our artist started with simple Japanese brush strokes: something they’d be familiar with.” She told of her own experience – which she attributes to honing her observational skills through art appreciation: “I was invited to Grand Rounds at a hospital that one of our artists is at. I saw a young man with an unexplained...