Improving End-of-Life Care With MS

Discussions about end-of-life issues are often taboo in our culture — until we are "suddenly" faced with unpleasant realities and challenging decisions. Although many deaths occur unexpectedly, a large number of deaths follow a prolonged period of decline in health due to a progressive disease. This path of decline has been termed "progressive dwindling."

Four broad trajectories of dying in an aging population were identified in a study of Medicare beneficiaries:

• Twenty percent of deaths followed illnesses, such as cancer, characterized by a clear clinical transition from treatable to untreatable progression.
• Twenty percent of deaths were related to progressive long-term conditions, such as COPD, complicated by acute attacks that increase the likelihood of death.
• Twenty percent of deaths were classified as sudden deaths, such as those following a fatal heart attack or accident.
• Forty percent of deaths followed a prolonged period of progressive dwindling associated with conditions such as Alzheimer’s disease or other degenerative conditions.

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Living with Advanced MS: Improving End-of-Life Care

We Need Better Language to Discuss Advanced MS

Occasionally, readers submit questions regarding “late stage” or “end stage” MS.  People want to know about “stage 4” MS, advanced MS or MS at the end of life.  These questions are often difficult to answer, not just because of the sensitive nature of the subject, but due to the use of nonstandard terminology.

What are the types of MS?

Almost two decades ago, the National MS Society asked specialists in MS patient care and research to help develop a common language to use when discussing disease categories and characteristics.  Four types of MS were defined as relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), primary progressive MS (PPMS), and primary relapsing MS (PRMS).

What are the stages of MS?

One way to view this question is to consider a person’s experience living with MS.  The first stage may include the recognition of unexplained symptoms which initially send a person to the doctor looking for answers, followed by the diagnosis itself.  The second stage might encompass a person’s experience in learning to live with the disease, while adapting to the challenges MS places in the road.  The next stage could be evidenced as the patient accumulates moderate disability.

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What is "Stage 4" MS?

End of Life

At HealthCentral, we are talking about "death and dying" during the month of March in addition to it being MS Education and Awareness Month on MultipleSclerosisCentral.com. Here's my post I wrote for MyRACentral...

Thinking about the end of life, at any age, is not a pleasant situation. We spend so much time talking about how to live well with chronic illness that we often fail to make our desires known in the event that life takes a downturn. We may not have considered how we’d like to be treated, or not treated, in our final days. I have only thought about this because I’ve watched relatives have drastically different experiences.

When my grandmother was dying several years ago, it was difficult for my father and his siblings to have the responsibility of deciding what type of life-saving procedures she may or may not have wanted. Even after she and her doctor had signed a DNR (do not resuscitate) order, it failed to prevent the EMTs from taking her to the hospital after a nervous home health aide panicked and called 9-1-1. This event further prolonged her life and suffering, but it did grant me an opportunity to see her “one last time.”

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Engage with Grace: Planning for the End of Life with Grace and Dignity

Good Time to have a Conversation

We're continuing a tradition started last year. Asking you to take a moment this weekend to discuss your desires for how to live the end of your life as meaningfully as possible--If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here Matthew Holt [or copy mine below]

Last Thanksgiving weekend, many of us bloggers participated in the first documented "blog rally" to promote Engage With Grace - a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations - our closest friends and family.

Our original mission - to get more and more people talking about their end of life wishes - hasn't changed. But it's been quite a year - so we thought this holiday, we'd try something different

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We've included them at the end of this post. They're not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we'd start with five parallel questions that ARE pretty easy to answer:

The One Slide[1] Satire

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Silly? Maybe. But it underscores how having a template like this - just five questions in plain, simple language - can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we've included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there's been a lot of discussion around end of life. And we've been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife's preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that's fulfilling in all the right ways.

The One Slide

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(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )