DISCUSSIONS : a guide to navigating healthcare choices

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And so, we invite our patients and families to tell us how important each of the three goals is to them, and which they would prioritize, if there were a conflict. You can certainly do some preliminary thinking on your own, when it comes to goals of care. When you discuss goals of care with your medical team, here are a few more things to keep in mind:. Basically, it involves asking two key questions:. So for instance, surgery and hospitalizations become riskier when people are frailer, or have dementia.

You can also use the benefits-and-burdens framework to work through non-medical dilemmas, such as whether to continue with a given caregiving situation versus make a change.

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Start by identifying your available options for managing a situation, or even just taking a next step in addressing it. These are some of the tradeoffs you would be making, in exchange for certain likely benefits. Moving to memory care can also mean more opportunities for social engagement and access to activities designed to engage people with dementia. But almost everyone feels better having clarified what trade-offs they are making and why, when they decide to proceed — or not proceed — with a certain intervention, or a certain care plan.

This is done by intervening when people are acutely ill, and by using the emergency room, hospitalization, or even intensive care, in order to minimize the chance of a person dying. It also means providing chronic medical care and preventive care, again with a key goal being to minimize mortality risk.


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Because when people are declining from dementia — or if they otherwise have limited life-expectancy — usual medical care becomes less likely to help them live longer, or better. It also becomes more likely to cause confusion, distress, and medical complications.

Navigating uncharted waters: a guide to shared decision making

Furthermore, usual medical care can crowd out, or directly conflict, with approaches that help people with dementia maintain the best possible quality of life and function. When given the opportunity, most families of people with moderate and advanced dementia eventually decide to prioritize the goals of well being and function — helping a loved one be comfortable, out of pain, and able to enjoy companionship and the small pleasures of everyday life to the best of their ability — over the goal of extended lifespan whatever the cost.

Of course, families often find it difficult to consider these questions of scaling back care. The key, once again, is to start by discussing goals of care with your usual healthcare providers. Each of these can take you a while to work through. Going through cycles of thinking about things gives people some time to gather up various bits of information, and also digest the information and their own emotions. Every time you think through one or more of these steps, you are adding to that foundation I referred to at the beginning.

You are creating and strengthening a foundation that will provide you with support and guidance in making decisions for your mom.

Most decisions you make on her behalf will never feel easy. They will all involve trade-offs, and some uncertainty, and perhaps even a little sorrow. But they can be less stressful, and you almost certainly can make her life better.

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This means less anguish for you, and more positive energy to put towards whatever time you have left with your mom. Remember, you can start using the five steps of this navigational tool at any point and revisit them over and over. But starting your thinking now, before there is a crisis? Good luck, and let us know how it goes.


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  • This article benefitted immeasurably from suggestions and edits by Paula Spencer Scott, my former Caring. My husband , of 60 years, very recently died of Alzheimer. One of the most helpful things his neurologist did was to refer him to Riverside Hospice. He stated he might last another 6 to 18 months.

    He died just short of a year.

    How to Use Social Media in Healthcare: A Guide for Health Professionals

    Having the Hospice nurse, who checked his vital signs and answered my questions and an aid twice a week to bath him helped me considerably. With my sons help, who lived with us, doing the lifting, we were able to keep him at home. Hospice provided the equipment and supplies needed for his care. At the time of his death he could not walk or talk intelligibly. I noted a change in his breathing one night and asked the nurse to come. He died very peacefully the fallowing morning. Thank you for sharing your story. I am glad you had a good experience with hospice, and that your husband had a peaceful death at home.


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    • You are a godsend. I only wish you could be cloned so that every older patient had a doctor like you. I do consider myself very ordinary among geriatricians, and I only wish that there were more of us available, to be of assistance. But as none of us can be cloned and we are all in short supply, I am trying to share what we know and do online. Thank you for being part of this community; your attention and encouragement helps me keep the site going.

      Yours is a very helpful article on caring for one with dementia. Then one day the doctor was not in his office, and I asked his nurse. She said yes that it was time.

      aduxiwas.gq It was a relief not to have to make that decision on my own. Thanks for sharing your story. So there seems to be progress, but I wish it would happen faster. Your email address will not be published. The material on this site, including any exchanges in the comments section of the blog, is for informational and educational purposes only.

      Any comments Dr. Kernisan and a caregiver, or care recipient. None of Dr. Please see the full Disclaimer for more information. Based on a work at BetterHealthWhileAging. Your privacy is very important to us. Your information will never be sold to anyone, whether you browse the site, sign up for email updates, or register for an event. Pleae read our complete Privacy Policy for more information and for Dr.

      Kernisan's financial disclosures. Getting Started Why Geriatrics Are you a caregiver? Right now things are stable and quiet, so we are trying to plan ahead. We have a will, power of attorney, and health care proxy in place. Learning what to expect from other chronic conditions. Use a specially designed conversation guide, if possible. They include questions such as: Would she worry about not getting enough care? Or that she would get overly aggressive care? Would she be okay with spending her last days in the hospital? Or would she really want to spend her last days at home?