Tag: end of life

Selling Hope Not Reality: Podcast 015

Podcast 15: Selling Hope Not Reality. Carolyn is unable to join me. Today I talk about Cancer Centers direct to consumer adverting and how their message avoids the reality of those facing a terminal illness. We are little hope machines looking to find a way out of our fear when faced with a terminal diagnosis. It is at this point when we need support and guidance from our HCP most.

sellinghope

There are two articles from GeriPal here and here on patients receiving a terminal diagnosis and direct to consumer advertising by Cancer Centers. I relate these articles to my own narrative of Donna’s diagnosis and passing.

The Future With Options: Podcast 009

Carolyn and I talk about options and taking control when we face end-of-life. Cure is not the only choice. Opting for quality of life is valid and important because living a life without quality is in some regards is not living.

podcast9thefuture

When you know the choices you have and make decisions based on that understanding we acheive control when we most need it.

Our discussion came from a podcast/essay by Diane Meier, MD in Health Affairs ‘I Don’t Want Jenny To Think I’m Abandoning Her’: Views on Over-treatment 

“life’s not a paragraph

And death i think is no parenthesis”

― E.E. Cummings

Advance Directive: Podcast 005

Carolyn and I talk about navigating an advance directive and our experiences completing them. A basic review and insight into the specifics of doing this important document and what it means for you and your loved ones.

podcast5advance

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3453

https://www.everplans.com/tools-and-resources/checklist-creating-an-advance-health-care-directive

http://resources.lawinfo.com/estate-planning/maryland/what-is-the-difference-between-a-living-will.html

Janene Carey “A Hospital Bed At Home” A Review

Last week Janene Carey commented on the Podcast, “Home is Where the Heart is. Dying at Home“. Janene Carey is the author of “A Hospital Bed At Home”. She thought I would find her book important. I read it a couple of days ago and it is an important book. Carey shares the personal stories of six caregivers who care for a loved one with a terminal diagnosis of either lung cancer or colon cancer. Amazon link here.

I’ve spent the past few days trying to figure out how to communicate what I am feeling and the importance of this book for me, for all of us. My struggle is not writers block or my own fear of writing but, how can I do justice to this book. Simply saying powerful, touching, evocative, disturbing, important, must read, feels excessive and boastful and a lot like bullshit. To not shout about these personal and powerful stories may fail to capture your attention and ultimate reading. Perhaps what is happening is that these stories are so close to my caregiving experience that I am stuck in a block of emotional amber. 

Most of you know about Donna’s passing, my caregiving, my view on end of life, and palliative care. And if you’ve read my posts or listened to my podcasts you also know that my experiences are a driver to educate and share because Donna and I were blessed to have received the care we did. And to know that care afforded us and me so much is a blessing that I want others to have access to. 

Janene Carey interviews five caregivers and shares her own story of caring for her mother. Each story is unique because we all look at dying, death, and loss differently. Each story is an exploration of the bond between caregiver and patient that exists prior to and during caregiving and after death. Carey takes the reader into the most personal and intimate moments any relationship faces, death of someone we love. These are stories of life and love and fear and loss and pain and joy. Carey examines the boundaries and bonds between the loved one and the caregiver  Over time she shows how those boundaries and bonds dissolve, the couples become one in compassion and love.

“People think it must be just horrible that it’s happened, you know, that the kids have lost their father and so on. But there were so many beautiful aspects of it that the word coping doesn’t seem to incorporate. What you’ve been through, in some ways it’s the most amazing experience. You’ve had the privilege of going through it with someone you’ve loved. They’ve let go totally in front of you and you’ve been trusted to be with them. ” 

I relate to this because Donna trusted her disease to me. 

“Guilt comes no matter what you have or haven’t done. To live without guilt after the death of a loved one, a person would have to accede to literally everything the other person wanted. And what that means is living one’s entire life in attendance of the other’s death …David Rieff “Swimming in a Sea of Death: A son’s memoir,”

 With each story, each paragraph we take the journey into caregiving and dying. The journeys are not easy and truthfully I recoiled at the detail of each and what needed to be accomplished practically and emotionally. These stories expose the harsh reality of caregiving and dying while providing a narrative how-to-guide. These stories become preparatory exercises for all of us. In his essay A Grief Observed CS Lewis notes that when he looks at couples he knows one will suffer grief and loss. 

I looked for hope as I was reading Carey’s book and that was not easy but, it was there. As I read these stories I looked back at my caregiving to see where I’ve been and what I felt.  I was not alonewe are not alone. Others experiences offers hope and a sense of place in a world turned upside down. Hope is not necessarily the future, it is the past put into a loving embrace.  

Carey does not limit her insightfulness to only the caregiver but how the world views and interacts with the caregiver. 

“The Badens’ acceptance of Hugh’s condition as terminal was something else that other people found hard to understand. It wasn’t the right attitude. The prevailing cultural norm is to regard those with cancer as soldiers fighting a war, brandishing the indispensable weapons of hope and positive thinking. People seemed to think it was their duty to act as recruiting sergeants and push Hugh forward to the front line, equipped with ”

And we see where the physician fails during this time. 

“That’s right,’ she replies. ‘And when I contacted them, they couldn’t believe that neither the oncologist nor the GP had ever suggested getting palliative care. They told me palliative care should be brought in at the beginning, when the diagnosis is made, not towards the end like I’d assumed. That’s why I contacted them. Because he was going downhill and I knew the time was coming when I needed that help to care for him at home. So I downloaded a form from the internet and sent it in.”

Who should read this book? Anyone that has been a caregiver because it illuminates that what we experienced and we learn we are not alone or if we cannot find words or emotions you will find them on these pages. Anyone who is a friend of a caregiver. Anyone who may become a caregiver. Anyone who will be cared for or is being cared for. This book is a must read in todays aging population and healthcare system. 

#dwdchat #eol #caregiving 
 

Physicians Learning About Law and Its Application at End-of-Life

Professor Sawicki writing a guest post at HealthLawProfBlog. “How Medicine Learns About the Law” offers insight into medicine and law. Specifically she speaks to malpractice and end-of-life. 

  • Physicians learn about law from friends, message board, media screaming heads. 
  • Physicians enter into medicine as Sawicki says ’scared straight’ fear driven.
  • Medical professionals fear of liability is unfounded. Though all physicians fear being sued. A 2011 NEJM study showed 75% to 99% of physicians had faced a malpractice claim by age 65. Sawicki points out engineers and architects face the same statistic. 

it’s important that medical providers have a more realistic perspective of how likely lawsuits against them are to succeed

Sawicki addresses areas within my wheelhouse, end-of-life and advance directive. She points out that physicians are pressured from families to over treat a no-longer competent patient even with an advance directive requesting no treatment. Why? Being sued. In her research she states:

… have not yet found a successful suit by a family against a physician for non-treatment in compliance with a patient’s prior wishes.

This struck me because there have been reports and articles that saw this differently: only 12% of patients with an AD received input from their physician and “65% to 76% of physicians with patients having completed an AD were not aware it existed. And the providers, family members, and surrogates did not meet the patient’s wishes for EOL management.” 

Other articles point to how physicians were only 65% accurate in predicting patient preferences and tended to make errors of under-treatment even following a review of the advance directive.

Professor Sawicki makes the point, the right result medically is the right result legally. What is medically right at end-of-life is the patient having their wishes met. Those wishes need to be set in place well before end-of-life and with an advance directive as well as identifying a trusted respected advocate. Carolyn and I spoke about this in Podcast #5 Advance Directive. 

Both the law and medicine need to step away from the crushing media bullshit on malpractice change and focus on patient wishes at end-of-life. We need to ensure patient wishes are patient reality.  

You Talking to Me? Language and End-of-Life

Bridget Sumser, LMSW writing in www.geripal.org has a short yet powerful post titled “The Importance of Language”.

Sumser addresses the idea that language used to communicate with patients and caregivers struggling with depression can have a therapeutic power. She uses a powerful though all to communal example:

Question: What’s her (the patient’s) code status?
Answer: “She is a DNR”

You see it as well? She is not Marge or Jane. She is DNR. What struck me is not the obvious the act through language of taking a person and reducing them to a behavior or action. What was interesting is how language, which we all know, drives message, sent message message received. What do individuals hear with the words we use?

I am not going to deconstruct the couple arguing over he said she said and how one word in a statement or comment or observation can evoke a response. How we communicate especially around the topic of palliative care, hospice, end-of-life makes all the difference in the uptake of knowledge and understanding especially if we are advocating to those who have not experienced any of these. Those who live in the echo chamber of end-of-life and have been touched by it with a loved one do not readily reject language or miss meaning since we share a common vocabulary. But our online voice and though chats, blogs, etc. reach those who are not familiar or share our common bond. Therefore language, words, and images drive meaning, understanding, and uptake.

In The Sun Magazine interviewed Katy Butler. Butler is a journalist and novelist who wrote about her fathers stroke and how modern medicine decreased his chances of a good death. “The Long Goodbye” is that interview which you can read.

Butler in her interview uses language to communicate her points very well and I see those words and images as tools we can use to communicate beyond the echo chamber we reside in online. Here are some examples that speak to our message and may connect better with those who do not share our experiences.

“Death used to be a spiritual ordeal: not it’s a technological flailing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into th hospital and mechanized it, ..”

“…when we eliminated sudden death death, we also eliminated natural death, and we lost the distinction between saving a life and prolonging a dying.”

“We’re not isolated atoms in space — at least, that’s the way I see it as a Buddhist. We’re part of a web of existence, and the “patient” is not just the patient but the family that will survive him.”

“If you’re a doctor, I think you have to look at whether you’re adding suffering to the family as a whole when you extend the life of an individual.”

These are some examples that connected with me and believe will connect with others facing end-of-life or earlier when they have a diagnosis that will end in death. Those are powerful images from Butler’s interview and the narrative about her father and mother. These are the messages we can use to communicate and use as discussion points when we write or speak on these topics. I am not dictating one message over another, her words vs. your words, vs. my words just that the broader and more expansive our vocabulary the better the chance we have to send a message that is received. Of course our listeners our audiences need to be receptive to learning but that is an entire separate discussion on adult learning. 

For me there is no good death. All death sucks. What we can do is advocate for and try to achieve a good dying so everyone involved is present and active in life and family during that time. 

Notes & Links: November 20, 2013

Electronic Word of Mouth on Twitter About Physical Activity in the United States: Exploratory Infodemiology Study

Zhang, Campo, Janz, et. al. took a long, hard, and well designed look at Twitter in promoting health behaviors. Their study published in JMIR is important to those of us who advocate for SM and Health Communications and using social media to improve patient engagement. The paper addresses physical activity an important surrogate marker for healthcare and Twitter because it opens our thinking about how to identify communications strategies for not just physical activity but all healthcare. The authors also present how we can use Twitter on how people talk about physical activity. 

Objective: In order to provide insights into designing health marketing interventions to promote physical activity on Twitter, this exploratory infodemiology study applied both social cognitive theory and the path model of online word of mouth to examine the distribution of different electronic word of mouth (eWOM) characteristics among personal tweets about physical activity in the United States.

Results: Tweets about physical activity were dominated by neutral sentiments (1270/1500, 84.67%). Providing opinions or information regarding physical activity (1464/1500, 97.60%) and chatting about physical activity (1354/1500, 90.27%) were found to be popular on Twitter. Approximately 60% (905/1500, 60.33%) of the tweets demonstrated users’ past or current participation in physical activity or intentions to participate in physical activity. However, social support about physical activity was provided in less than 10% of the tweets (135/1500, 9.00%). Users with fewer people following their tweets (followers) (P=.02) and with fewer accounts that they followed (followings) (P=.04) were more likely to talk positively about physical activity on Twitter. People with more followers were more likely to post neutral tweets about physical activity (P=.04). People with more followings were more likely to forward tweets (P=.04). People with larger differences between number of followers and followings were more likely to mention companionship support for physical activity on Twitter (P=.04).

In their section on Principle Findings the authors point out that physical activity is different from other commercial activity which shows 60% of tweets positive, 12% neutral, and 25% negative. In their study 85% of tweets were neutral. They attribute this finding to the fact buying something is a transaction that people can easily and quickly identify likes, dislikes, pluses, and minuses. While it takes longer to identify tangible results with physical activities. The authors offer an alternative explanation

… people might be less willing to comment or have more difficulty commenting on their own behaviors than on commercial products. When people comment on a product or service, they evaluate third-party providers, which is a relatively easy task. When discussing physical activity, however, they have to evaluate their own behaviors and their own selves, which may be more difficult cognitively

This is important as we move forward in SM and HC. how do we help or identify patients willingness to self identify their own health behaviors. More importantly how do we understand what and how patients are doing with data gathered on the internet or via social media? 

Changing or learning about healthcare is not like buying a car though it is moving in that direction through price transparency and the publishing of outcomes by hospitals. And consider the reality where a huge percent of adults use the internet to seek health related data and knowledge. Inquiring minds want to know. This melding of healthcare into a consumer driven decision with four parties exerting pressure on the system patient, HCP, hospital, and insurance provider is not going to go away soon. In some regards the power is moving to the patient. (I would like to see the true power couple being the patient and the HCP.) Where Twitter and other social media comes in is through the consumer seeking information and knowledge in order to make the decision regarding treatment, provider, HCP, etc. Therefore, those in the business of or providing healthcare would want to consider how does the consumer find, use, and share knowledge on their health. The authors addressed that this way:

People with more followers were more likely to post neutral tweets about physical activity. People with more followings were more likely to forward tweets. These findings suggest that people with different number of followers and followings may have different motivations for using Twitter regarding physical activity. People with fewer followers and followings might be more likely to connect with a close social network on Twitter and talk about physical activity positively for fun, whereas people with more followers and followings might be more likely to use Twitter primarily for information sharing about physical activity. However, future research is needed to further examine the reasons and confirm these suggestions.

The authors noted that the gap between following and followers is important because people with the widest the gaps were more likely to mention companionship support on Twitter. This was counter to the idea that a narrower gap may demonstrate “higher reciprocity between actual friends”. It is thought that the wider gap may mean more actual friends. Taking this outside of physical activity it could point to a way to look at caregivers seeking information and their support network where they are following many who have knowledge to share but only share with a small group of friends.

In the section on Practical Implications the authors make the following observation:

Findings about how eWOM characteristics differed among Twitter users with different networking characteristics can provide insights into segmentation of audiences in future physical activity marketing interventions on Twitter. The association between the number of followers and followings and the valence of eWOM about physical activity indicates that interventions encouraging positive discussion of physical activity could start by enrolling individuals with fewer followers and followings and observing and learning how they talk positively about physical activity.

Because people with more followings tended to forward opinions or information about physical activity on Twitter suggests that public health practitioners could target people with more followings in future physical activity marketing interventions. Public health practitioners could develop Twitter accounts to promote physical activity and encourage Twitter users to follow the accounts and retweet tweets about physical activity to their followers.

Taken out of exercise and considered for healthcare in general. These finding speak directly to ways and audiences to address specific to healthcare delivery either from the HCP or the provider. Finding the right audience who will expand the message with authority and who will help improve care is key. The authors have given us not just an analysis of Twitter and exercise but how to look at Twitter as part of a strategy to determine who, what, where, when, and how changes in healthcare can be made. 

Making Medical Decisions for Patients without Surrogates
NEJM has a perspective written by Thaddeus Mason Pope, J.D., Ph.D. which continues an article from last months New York Times “Hiring an End-of-Life Enforcer” 

In the NY Times article addresses the need to fill the gap identified in 2006 study that reported 16% of those in intensive care have no designated decision-maker and family to fill that roll. Paula Span author of the Times article talks about health fiduciaries who could guide the patient in these decisions. Pope in the NEJM addresses how the healthcare professional and the state are addressing this gap of the ‘unbefriended’ or “unrepresented’ since any decision made for this group of patients may not meet even minimally sufficient safeguards. “Consequently, health care decisions made on their behalf are at risk of being biased, arbitrary, corrupt, or careless.”

None of these decision-making mechanisms, however, can help the unrepresented. They have no POLST forms, no advance directives, no agents, and no default surrogates. And the unrepresented are a big group — including some elderly and mentally disabled patients, as well as many who are homeless or socially isolated. In many states, lesbian, gay, bisexual, or transgendered patients may have same-sex partners who could serve as decision makers but are not legally recognized as surrogates. Experts estimate that 3 to 4% of the 1.3 million people living in U.S. nursing homes and 5% of the 500,000 per year who die in intensive care units are unrepresented.

Pope notes that Georgia enacted a medical-guardian statue to help the unrepresented. A survey of Georgia probate judges show the law in ineffective because there are not enough people who want to do this work. 

One policy Pope presents is prevention. Keep patients from becoming unrepresented from the get go by supporting their ability to make their own healthcare decisions, complete advanced directives based on choices and decisions, help them find and agent, finally identify a surrogate. 

Physicians can make decisions for these patients since they are trained to but are not good surrogates and most states specifically prohibit patients from selecting their physician as surrogates. Pope sees the ethics committee who can work hard and quickly to identify the patients wishes and offer different perspectives. Here is the bad news on this, only five state have empowered multidisciplinary committees to make treatment decisions. The rest of the states can do better and should. 

So long as legally sanctioned mechanisms are nonexistent or inadequate, I believe that providers have both the duty and the discretion to design these policies.

I agree and more importantly this is the ultimate in social networking, embracing those who can’t or don’t have the ability to make end-of-life decisions. We will not find them on Twitter. They are residents in hospitals and nursing homes. How can we reach out to these institutions and offer our knowledge, capacity, and friendship to support and help those in need? Instead of having followers on Twitter perhaps we need to follow someone who is alone and dying so they do not suffer needlessly. 

Creating A Teachable Moment for Patients In Palliative Care and EOL

Wow is all I can say to a study published in AMA Internal Medicine titled “Early Palliative Care in Advanced Lung Cancer” by Yoong, Park, Greer, Jackson, et al. You can find the abstract here. (Sorry but it’s behind a pay wall.) This article should be free. The data and the recommendations it presents is a crucial component in moving more patients toward a better understanding of palliative care. Limiting distribution to only healthcare professionals (HPC) limits the number of patients and their families from understanding its value and benefit.

This study extends the work of Jennifer S. Temel, MD whose article “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer” in the August 10, 2010 NEJM offered a very clear picture of how ” early palliative care led to significant improvements in both quality of life and mood.”   Yoong et.al stated objectives were: 1. Identify key elements of early palliative care (PC) 2. Explore the timing of key elements, and 3. Compare the content of the PC physician (PCP) and oncologic visit. They were looking for the important elements of the clinical visit with the PCP that improved outcomes. This study found that early PCP visits focused on symptom management, strengthening coping, and prognostic awareness. While later and more crucial visits have a distinct set of features for PCP involvement and enables to oncologist to focus on cancer treatment and management.

My enthusiasm about this article and its data is centered on the fact that communications, relationships, and rapport were early elements established between PCP and patient. These elements I believe drove the results. Communications, relationships, and rapport are the cornerstones of learning and reflection. Learning and reflection are critical to changing behavior. In addition communications, relationships, and rapport establish a baseline for the more difficult discussions such as end of life (EOL), resuscitation preference, hospice, and change in treatment.

The authors noted that the PCP visits centered on psychosocial aspects of worsening disease and how that effects both patient and family while the oncologist focused more on the disease, its treatment, and management. The authors further noted that they observed the content of early to later PCP visits changed to match the disease trajectory and did not follow a checklist. This seems to match the reality that guidelines in generally are not applied to all patients. And I see it as pointing to a path in managing palliative care specific to patient needs. We all face death and dying differently not one guideline will serve all.

One data set that the authors note is that the PC clinicians focused on establishing a relationship, which leads to identifying needs and preferences for information (knowledge transfer) early. Later in the disease trajectory when treatment was failing and the disease progressing and discussion of EOL was initiated that relationship was drawn upon. Further the authors noted there was not a presumed discussion of EOL care or hospice when the PCP was brought into the clinical picture. It does not support the argument that the PCP early on will bring EOL and hospice up.

Early visits to the PCP, patients and family and the establishment of a relationship drives continuity of care and greater familiarity with the issues and needs of patient and family on both sides. This improves the quality and reflection surrounding later and more complex disease issues such as change in treatment, EOL, and hospice.

This study is within my area of interest palliation, hospice, caregiving, and adult learning. This study presents a place and time where the application of adult learning will drive understanding and knowledge transfer. With the reality of the patient status and the knowledge the PCP has there exists a ready-made value exchange; patients are seeking solutions to problems and the PCP can directly address that. But to be the most effective the PCP needs to understand what are the patient and family gaps in knowledge. What can be done to improve that relationship based on knowledge transfer, strengthen it, make it work better to produce more valuable outcomes?

First, patients as all adults will learn only when they are seeking solutions to problems they want to solve. Patients who are entering palliative care are facing the most difficult problems in life but many may be unable to characterize or articulate those problems. What can be done to aid them in such a way that they can better and more quickly identify problems/needs to the PCP or oncologist? In addition what can be done to aid the PCP or oncologist to improve his/her knowledge in order to maximize the benefit of communications and rapport to create a true value exchange between patient and physician? The authors are looking to at an additional study to identify ‘salient elements of clinical encounters and nonverbal communication that occurs between patient and PCP physician. If we understand the problems these patients are seeking to solve earlier and more clearly we can better manage them and match them to the trajectory of the disease. We may in fact be able to circumvent the need to monitor nonverbal communications, as a tool to ferret out knowledge about patient needs.

Creating a simple and short inventory that the patient and the caregivers complete independently at the first visit would serve the long-term needs of both. And this type of learning is bidirectional were both PCP and patient exchange knowledge that creates reflection on action. I would recommend creating inventory questions using the authors Key Elements of Palliative Care Visits: Relationship and rapport building, Addressing symptoms, Addressing coping, Establishing illness understanding, Discussing cancer treatments, EOL planning, and Engaging family members.

This inventory/needs assessment tool first and foremost identifies problems the patient and family are seeking solutions to. Once it is completed the difference between patient and family would be determined first. These differences are gaps that may or may not need to be closed but clearly need to note and managed because of the dissonance it may create. Answers to the questions by patient will be used to focus discussion and what information to bring to the table and how that information changes behavior and attitude. Keep in mind the completion of this inventory goes a long way to opening learning receptors for the patient as well as the PCP. This ‘needs assessment’ serves as mile markers along the disease trajectory and can be easily updated.

Yoong, Park, Greer, Jackson, et al. have served up proof that palliative care works, that creating rapport and a relationship with palliative patients offers benefits and outcomes that improve quality of life, EOL planning, and the ability of patient and family to face decisions. Improving the ability of the both the patient and the PCP physician to determine needs and problems will go a long way to improve palliative care and EOL decisions. We have all the clinical tools in place what we to do now is create those tools that will allow for higher quality communications and rapport during this darkest of times for any human. 

My View and Experience in Caregiving for the Dying

This was originally posted on a discussion group Coping – Caregiving as life passes me by at Virtual Hospice Ca. It is my view of caring giving as I lived it. 

Pudding, Missy 2012 and everyone: I relate very strongly to this discussion the comments as well as the emotions. My wife died 08/07/2011 after two years in treatment and ultimately three weeks in hospice. 

Being a caregiver is hard physically and emotionally but it was a job I closed my business to apply for. How did my counselor at CancerCare.org put it, Donna put her disease in my hands, she gave it to me to manage and guide her. And this was the strongest most independent woman I have ever met. I was honored to be there for her and to have the chance to move our relations to new deminisions and places. But the truth be told toward the end I would come home from my part time job and just sit on the stoop afraid to go up and see the disease see the pain. But I did it knowing it was my job my love my goal my place in our lives. Today I still miss her so much especially since her birthday is Thursday Feb 14. But I know she had me and that what I did was love at its purest. 

One final thought on hospice. It was not for her alone it was for me. It gave me the chance to surrender the caregiver burden and bask in the final time together. And also it was the place for me to gain comfort and care from an iamazing staff who saw me as a patient as well. At the same time I could apply my knowledge of medicine and healthcare to ensuring she had the care she needed. 

In the end caregiving is a rip tide of emotions that will drag you out to sea but it is a place to plant a flag and take a stand in the name of love. Hospice is that as well.

Hospice, Palliative Care and End of Life: Practical Considerations

Those who follow me know my areas of interest. They revolve around a somewhat narrow constellation of topics. One area is adult learning and how it works to drive an educational strategy for patients and HCP (healthcare providers). Another area is social media and how we must think goals and strategy when we want to apply social media to solve a communications, education, marketing, or brand problem. Finally there is the topic of hospice and palliative medicine (HPM) and how important that service is for both patient and caregiver.

One organization that’s also looking at the practical aspects of HPM and EOL is a company I was recently introduced to called Everplans (www.everplans.com). Everplans is a website that addresses, in a new and practical way, the topics of end-of-life and death. (Yup: yet another bummer post by me.) But I must say that after having faced these issues with Donna’s passing 18 months ago, and now in the middle of organizing my own life, this website comes as a welcome resource. Dare I say a bit of light for my darkness?

The site is broken down into categories that apply to all of us: Long Before Death, Eldercare & End-of-Life, After a Death, and Be There for Someone. These buckets are further broken down into key components or steps. These steps are presented simply, clearly with articles and tools, links and explanations, designed to educate and take action. The site is a one-stop resource for anyone interested in planning or learning: those in their 20s and 30s, and those facing the passing of a loved one, post death realities, and what to do and how to do it when a friend or family member dies. I know that for me, I winged the practical considerations at Donna’s death and stumbled along the way—largely I was on autopilot and just pushed through those first few weeks.  Everplans could have served as my checklist and backstop resource. It may have even helped me face the grief of doing this alone.

More than ease of use, this site and the practical steps it presents are part and parcel of my larger reference point: HPM gives so much to the patient and caregiver. HPM is about treating the entire patient clinically, emotionally, and spiritually, while considering the same gestalt of the family. This is especially critical during the end of life and after the death of a loved one. I believe when we bring the services Everplans offers into caregiving, when these issues and tools are part of a family discussion, it opens emotional receptors within us that connect us to our loved one. It not only takes the worry and struggle with these topics off the table; it opens the conversation to include topics we may not want to address. But in addressing these issues openly we free ourselves and our loved ones from struggling with them, especially when they are least able to. Everplans is part of HPM, part of how to better live our lives.

In my opinion HCP and HPM providers should be pointing patients and families to Everplans (or sites similar) in order to guide patients through their options and to ensure critical paperwork is completed and put into the electronic medical records. Eliminating a potentially emotional and difficult task will aid the continuity of care and the well being of the patient, the caregiver, and family.