This Lunch & Learn session features an informational in-person event, presented by Lynne Calkins of End of Life Choices California who will address the advance care planning that is so essential for everyone–but for members of the LBGTQ community in particular.
For our fourth week in April honoring National Healthcare Decisions Day (April 16), we will complete this series by discussing two additional topics that can be added to an Advance Directive as addendums. Both are important and worth discussing. So, let’s get started.
POLST stands for Physician Orders for Life-Sustaining Treatment. In some states it is called a MOLST (Medical Orders….). In California it is a POLST. This is a document that is signed by you and your physician. Most physicians will not be interested in signing this form with you until you are seriously ill enough that you might not be able to make medical decisions for yourself. Once completed, this form should be kept near the patient and be readily accessible to emergency medical personnel, assisted living facility staff and other caregivers. The form should follow a patient from home to emergency services, and to a hospital or other facility.
This document/form is unusual in that it is almost always bright pink (but it does not have to be). Here is a link to California’s POLST form. The purpose of this bright color is so that the form can be easily found in the home (generally on the refrigerator or on the back of the front door) by emergency personnel or others who need to know right away how to care for you in the event of an emergency.
Dementia Directive is a communication tool. It provides a way to share your views with loved ones, to let them know what you would want in case they have to make medical decisions on your behalf. Families often face making difficult decisions about their loved ones’ care. This directive can help them feel more sure that the decisions they are making are closer to what you, their loved one, would have wanted.
This directive is not yet considered a legal document. It is purely an opportunity for you to outline what your preferences are should you become unable to make decisions for yourself due to dementia or other brain-related disease.
Many of us have clear ideas about the kind of medical care we would want if we developed advanced dementia. This directive can lessen the chances that you might get more medical care – or less medical care – than you would have wanted if you develop dementia.
We have more information on this topic here on our website. There also are links to other organizations who have developed excellent Dementia Directive forms and are well worth perusing.
End of Life Choices California has trained, able and willing volunteers who are happy to walk through these forms with you, how they work, and how they might fit in your situation. A simple phone call (760-636-8009) can put you in touch with one of these wonderful people.
THANK YOU if you have taken the time to read our weekly blog posts about Advance Care Planning this month. We did it because we think this is such an important part of planning ahead, and ultimately to have the end of our lives be exactly how we would want them to be. For most people, the primary wish is for a peaceful, dignified ending. These Advance Directive forms and addendums are a strong beginning to that process.
Also, please know that we are completely volunteer-run and do not receive any funds from state or government agencies. We rely on the kindness, compassion and generosity of our reading public and those families we can help when their terminally-ill loved one is trying to achieve a peaceful death. Please open your hearts and send us a donation, no matter how small or large. It all helps tremendously.
Most of the work we do at End of Life Choices California involves talking with people about dying: addressing their fears, providing support with problem solving, helping them access the resources they need to plan for the kind of death they wish for. Some people might find this kind of work challenging and even distasteful. But we love it.
We TALK about it! So many people have said something to our volunteers along these lines: “Thank you for your honest and frank conversations with me. No one has been willing to have them and I am so grateful and feel free from worry now.”
Another important aspect of our work is helping people do the necessary preparation in case of a medical emergency, or diagnosis of a serious or terminal illness. This process is called Advance Care Planning. We teach seminars on this and enjoy educating people on how to plan ahead.
One thing people often don’t know or think about is this is important for EVERY PERSON OVER THE AGE OF 18. All adults should have an Advance Directive and have shared it with their important people.
Therefore, in honor of National Healthcare Decisions Day, on April 16, we are devoting the entire month of April to paying attention to these important matters. Every week we will post a new blog on a different but related topic on Advance Care Planning. If you read every one, at the end you will be an expert!
Please join us in these important discussions.
As I contemplate life on my porch in late-May 2020, I feel many different emotions.
As a nursing home and hospice physician, I mostly feel sad that so many of the people I care for are dying—often without the basic comfort of a family member at the bedside. I also feel concerned and sympathetic for those whose lives have been—and will continue to be—devastated by either the loss of a loved one or the loss of their jobs, mortgages, businesses, and the familiarity and comfort of ordinary life, which may never be restored.
At the same time, as an optimist, I am trying to make lemonade out of all this. What might we gain from this pandemic? There are obvious tangible gifts, like the favorable impact on the environment. People have learned the importance of handwashing and how to do it correctly. The “great pause” has given people the chance to take stock, reflect, hold space, and perhaps appreciate some of the small things we usually take for granted. We have learned how to use digital technology more widely for virtual doctor visits—even palliative care visits and end-of-life advance care planning discussions—and for professional meetings, webinars, town hall meetings, and the like. When we are practicing social distancing, it is clearly a blessing to be able to commune with others even without the actual physical hugs and handshakes (which may become a thing of the past, sadly). Support groups like 12-step meetings (AA, NA, etc.) now have a large online presence that is invaluable for those practicing recovery from addictions. For health care professionals, online support for burnout is also available.
We have also seen a huge outpouring of charitable work of all kinds, and the heroic contribution of first responders and healthcare workers, who put their own health on the line in service to others—like the certified nursing assistants who work for close to minimum-wage salaries, doing the backbreaking but essential work of providing direct care to debilitated, frail, dependent elders and other chronically disabled individuals. Now more than ever, their efforts should be appreciated and celebrated.
And during this time when we have more family time (either in-person or virtual), and when people of all ages are dying of this virus, I know more families have taken advantage of the down time to reminisce about loved ones who have already died and to discuss their own beliefs, treatment preferences and what is really important to them. It is the perfect storm for advance care planning! There are many online resources to help families broach these subjects and have deep, meaningful and often healing conversations. With its devastating pulmonary effects, COVID has helped make discussion of intubation and mechanical ventilation more of a household subject. I’ve had multiple conversations with nursing home residents about their treatment preferences, and some of them now say, “If I got the coronavirus, I would not want to be put on a ventilator.”
These are difficult times, and this is a cruel pandemic in many aspects—and we will continue to suffer the direct and indirect consequences for a long time to come. But over time, as the dust settles, I am confident that we will have learned some lessons and will come out of it changed for the better in many ways. Let’s be kind to one another, tell our loved ones we love them, we forgive them, we ask their forgiveness, and we treasure our relationships with them.
That is certainly a half-full glass of lemonade, right? We will get through this together.
Karl Steinberg, MD, CMD, HMDC
Dr. Steinberg has been a hospice and nursing home medical director in the San Diego area since 1995. He is president-elect of AMDA – The Society for Post-Acute and Long-Term Care Medicine, a past chair of the Coalition for Compassionate Care of California and past president of the California Association of Long-Term Care Medicine. He is vice president of National POLST and sits on the National Quality Forum’s Geriatrics and Palliative Care Standing Committee, is a certified healthcare ethics consultant, nursing home medical director and hospice medical director.
We appreciate working with Dr. Steinberg on end-of-life care issues and look forward to our continued partnership with the San Diego Coalition for Compassionate Care. (Dr. Steinberg is pictured above with his wonderful Tessa, Charlotte and Josie.)
Photography by Ghislaine Guerin and Chris Montgomery.
