Hospice The End and Beyond: Podcast 020

Hospice The End and Beyond…yes there is life after hospice. I talk about living after a loved one dies and the role hospice and the hospice team plays in this life altering event when we are left behind. The final week to ten days in hospice was pretty much a blur. A mass of shifting images that still choke me. During that time I was trying to keep myself busy. Again trying to will my way though this with activities around hospice and donna. I filled the day the night going to hospice to be with donna. And start again the next day. And the next. Ground hog day from hell.

 

Entering Hospice Dignity in the Face of Fear: Podcast 019

The overwhelming emotion when you first enter hospice is fear. Well not really fear just a blanket of sadness less about the place and more about how would this play out for how long and in what capacity. Perhaps though my eyes and reflection we identify a different emotion, one where we can find a safe place during this horrific sad time.

 

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.

Does There Have to be End-of-Life for the Caregiver?: Podcast 012

Carolyn and I talk about the caregiver and how end-of-life for a loved one does not mean end-of-life for the caregiver. We address how the team embraces the family and what they can do. I address my grief and hurt with the knowledge that the hospice team and the social workers were there for me as much as for Donna. This podcast brings back memories that still sting yet offer insight.

podcast12doesthere

Are We Born Caregivers?

Communications in Palliative Care and Caregiving

Caregiver in Charge

One Hospice Repeated Failures

This is troubling to read since I believe Hospice’s are above the fray. They understand the human condition and needs of people in crisis better. They deliver more than healthcare they deliver care for patients, family, caregivers, each other on all levels not just clinical.  I guess that is separate from knowing how to educate and teach. Here is the full article.

CDPH investigated the 4/26/12 incident regarding the required proper instruction hospice must give to patients and caregivers when administering drugs. The caregiver in this case gave the patient 10 times the prescribed amount of morphine. The report states, “the hospice agency failed to ensure Patient A’s medications were administered in a safe and accurate manner, as prescribed by the physician.”

Caregivers want to do the right thing we need to give them all the tools and abilities we can to aid them. I can not imagine accidently killing my wife while caring for her. 

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. 

What If We Gave Ribbons for EOL and HPM?

Wednesday night during the hospice and palliative medicine (#hpm) chat there was a great deal of discussion on how to improve the HPM message to achieve wider acceptance. The question was; why aren’t more people supporting/using/talking HPM? It was a veritable Mumbi traffic jam of brain cells crashing into one another and tweeting ideas. There were the headlines, tag lines, messages, data, and a slew of tactical other recommendations. Some were good, some were not, overall the earnestness of those wanting to fix this demonstrated how critical it is that we once and for all get a handle on HPM and bring its benefits to more.

The literature is filled with references, data, studies, support, and more for the value of HPM. There is no shortage of organizations and groups promoting and advocating for HPM. We know the data. But we also know the other data, neither HCPs nor patients want to talk about it or learn it. Once they do understand it they are more likely to discuss it.

We have Death Cafe’s  and Death with Dignity The CAPC is an amazing resource for HCPs. With all this and more in place and the brave new digital world we live it should be a slam-dunk to change how we view, use, and accept HPM. The reality, it’s moving at a glacial pace. What can be done to change that?

It’s time to role out P&G, MickeyD’s, Big Pharma, etc. marketing departments and attack this problem as if we are selling soap on a rope. I will lean heavily on Greg Satell at Digitaltonto. His keen marketing and digital insight will help guide this discussion.

Last October Greg posted ‘The Post-Promotional Paradigm‘ which looked at how consumers and brands interact in the digital era. He presents three pillars of the brand (HPM for this discussion) awareness, advocacy, and sales.

Yes I said sales meaning physicians speaking about HPM and patients understanding it and adopting it. Have we been converting awareness to uptake? How efficiently are we converting awareness to use to avocation? I am not sure I’ve seen the data that shows growth in both understanding and use of HPM between both HPC and patients. We need to measure change to know if what we are doing is working and how to adjust it.  

Awareness is clearly critical for HPM. To create awareness you can spend money or you can be clever. People are aware but the accuracy of that awareness is sorely lacking and misguided. Greg states rightly so that consumers are likely to buy your brand if they are familiar with it. With HPM they need to be comfortable with it but most patients are aware of the wrong message. You need to convert misinformation to good information and that effort is harder than simply raising awareness. You need to replace misinformation with accurate information.

Advocacy is not simply someone speaking well about HPM. It is a complex interrelated process. We have advocacy galore with all the chats etc. but it is our echo chamber. Advocacy as Greg sees it is part of awareness. Those who come to understand and accept HPM need to advocate for it and means a sea change in peoples attitudes. It means they must accept it for themselves and then speak up for it, which currently has a degree of discomfort.

Greg further presents a framework that fits with HPM. It is seed, convert, and share. Seeding is the action of non-paid media. We seed messages on FB, G+, Twitter, Blogs, etc. It and of itself is only part of the an overall strategy it needs the addition of paid media to succeed. For our discussion of HPM paid media can be as minor as local hospices placing small space ads.

Share is where brands or those of us advocating HPM share our messages with others who advocate similar messages or messages within the same ballpark. I would agree with Greg here sharing as we currently do it does not have the consistency of message we had all hoped for. It is not reaching who we need to reach. We talk to ourselves and share with those who already have similar views. That may be changing.

Greg ends his article by addressing the fact consumers (i.e. learners) haven’t changed how they talk to each other. We are assuming that we should stop promoting in favor of conversations. We assume the Internet and social media will help change awareness and understanding of HPM. In reality we need to build a more traditional approach to promoting and marketing the benefits of HPM.

Okay I’ve given you marketing 101 according to Digital Tonto. This is as helpful as tossing URLs on Tweets. Here is how I would apply Greg’s views to HPM. And one caveat this is marketing and communications, there is not one yellow brick road but a super highway to sell HPM.

Humans are little tiny hope machines. They exist for hope, for belief in the future and life. That is at the core of why HPM is not selling like the strawberry pancakes at IHOP. Hope trumps EOL. We have an infinite loop of ribbons and survivor stories. People are donating to find cures and data shows improved survival rates. Our war against cancer is working. People are no longer shunning the word cancer. HPM and EOL pales next to this. Both have huge benefits. I won’t go into that since I’ve posted it before here and other place. HereHere

Most people consider HPM as the Darth Vader of medicine. It needs to become Luke Skywalker. So we have to change perception, gain awareness of a new HPM, position it as a benefit to patients, family, and HCP. We need to create awareness, advocates, and measure change. We need a SM message consistent with a paid message. This is a tall order for groups that are budgeted poorly, if at all.

The steps I would take would be: shock/awe, convert awareness, educate, create knowledge base, reinforce understanding, and measure uptake. I will speak to the first two and perhaps address the others later.

Shock/awe is my way of saying we need to dramatically move HPM EOL out of the musty dank dark trunk in the attic. It needs to burst into the sunlight. So to that end I propose we create a ribbon for HPM or EOL a black ribbon with a smile face. How dramatic would that be? The uproar in the media, the net, and among groups who have ribbons galore would create a natural platform to speak from and if enough media runs with this awareness of HPM would grow. Yes it could backfire and just reinforce the HPM EOL bad press or no press. But as Neil Young says, “It’s better to burn out than fade away” I double dog dare any group out there to have a HPM EOL fun run with ribbons. Money donated goes to supporting palliative care and education. Make your local media sit up and take notice. I’m a bit glib here and I recognize messaging of this is critical but the concept is big and bold. I’m open to other ideas within this context.

Following shock/awe is converting that awareness into useful knowledge by consumers. Once you create the drama you need to provide knowledge base for people. Here is where you apply traditional marketing with digital. Continue the discussion.

So do we politely talk and advocate for HPM and EOL? Or do we step up and tackle it head on with aggressive and smart marketing? HPM and EOL is not something you are left with it is a decision, a choice as critical and evidence based as any treatment option with well defined outcomes for everyone.

July 18, 2011

On  July 14, 2011 the oncologist and the team spoke with us to introduce the concept of palliation. It was a hard and difficult conversation to hear and with 20/20 hindsight it was the moment that Donna began to give up.

They recommended home hospice. So that weekend I pulled it together and ordered the bed, etc. I guess after the weekend and taking one look at how emotionally fucked I was they recommended Donna be moved to Karpus 4 the in unit hospice. For the next month the bed remained in the apartment reminding me of what was not happening. What was lost. What will be forever. She will not be back. Of course I can always go to her.

Palliative Care and the Hospice: A Gift for the Living

This is going to be largely an opinion post as a follow-up to the previous one about palliation. Clearly palliation has a place and it works just as hospice and EOL care does. This cannot be disputed. And there are benefits for both patient and caregiver when this care is implemented. 

Yesterday during a group session we were talking about palliation and pain management. We were discussing that at times in either nursing homes, at home, or hospitals patients with terminal illness may not be receiving proper pain management. A person familiar with that commented that there are cases that we’ve all seen, where the patient is in abject agony and they are waiting for their next administration of pain meds, which comes but never gets ahead of the pain. Or the family feels that having the patient overly sedated is not fair to them. And there is always the fact the attending may not be up to speed on pain management etc. These are all problems that can be solved with education learning etc. We have to work toward fixing these issues. 

What struck me was how my experience with Donna and her time in hospice etc. was different from some others that I’ve spoken with. Make no mistake about it hospice is horrific for everyone involved. It is not the Four Seasons but it meets a critical need. It serves a purpose and achieves its goal for the patient and the family/caregiver.

Psychosocial adjustment that raises patient quality of life is also dependent on the relief of burdens and the strengthening of important relationships prior to death (Singer et al. 1999). Patients often have great concern that they are being a burden to their family and their caregivers (Steinhauser ct al. 2000a). Improving communication between patient and family and patient and healthcare professionals could do much to relieve the burden that terminal illness may bring and strengthen the relationships that arc necessary to raise the level of quality of life at the end of life. Raising quality of 11% and quality of death maximizes the patient’s opportunity to experience a good death.” 

Beyond the patient’s care and comfort we must consider those left behind. Those who carry the burden of watching and caring for a loved one during illness and at end of life. The time following a passing is as important as the time spend in health. It should be spent in positive memories during healthier times. Time following a death should be spent sorting out what was and wasn’t in the relationship and how to create a tapestry of that love that will stay with us for our lifetime. 

I know for me with the positive experience I had with palliation and hospice it still took me months not to have the images in my head of Donna wasting in hospice. But they have been largely replaced by our life together. This begs the question, for those loved ones left behind who may not have benefited from palliative care or hospice, what are their lasting images and impressions? Do they question why they were not offered palliative care or offered it late or choose not to implement it? Do they spend their time post death sorting out what happened in the last few weeks and not what they had during a lifetime? Are those family members and caregivers, who did not benefit from palliation, do they have higher rates of depression? Do they suffer greater incidence of complicated grief when compared to caregivers who were part of a palliative care process?

Palliative care is a gift. It is a gift from the healthcare community and the person who passed away. It is a gift for both the living and the dying.