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.


Are We Born Caregivers?

Communications in Palliative Care and Caregiving

Caregiver in Charge

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 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. 

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 ( 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. 

If I’m Not A Survivor Am I a Loser?

Based on an article in the NYT ‘Life, Interrupted: Am I a Cancer Survivor?‘  I posted the a Tweet and received the following responses which is spurring this post. 

These response made me stop to consider who are the losers and winners in terminal and serious illness? 

In the NYTime article Suleika Jaouad asks the following question ‘What does it mean to be a survivor?’ She further states that, and rightly so, the term “survivor” is as ubiquitous as it is hard to define. Cancer, its diagnosis, treatment, and outcome is as complex as Higgs boson. Cancer is not a binary zero or one, on or off, yes or no. It is a gradient of the disease, the patient, the family, the HCP, the insurance plan, and a dozen other variables. To look at someone with cancer as winner or loser I believe harms those with cancer who choose palliation or hospice. The reality is that there may not have been a choice to go into palliative or hospice care but, to position that decision in relation to being a survivor a winner harms the entire spectrum of terminal illness and especially cancer. 

Let me make a point right now. I am not advocating that those diagnosed with cancer don’t fight like hell. They should do anything and everything to not lose that fight. (You can’t help but use that win lose analogy.) At the same time the American Cancer Society states there will be 1,529,560 new cancer cases and 569,490 deaths from cancer in 2010. The ACS further reports Cancer death rates fell 21.0% among men and 12.3% among women during 1991 to 2006. This could not happen if there were not winners and if people were not committed to survive. Those half million Americans who died fought their disease. Are they losers? And as they were losing their fight did they suffer unnecessarily? Did their loved one witness something that will forever remain etched in their memories? Those of us who have benefited from palliative and hospice care I hope feel as I do, even in my loss, my wife’s ultimate loss, there was a small sense of victory, it was dignity for both of us. As I’ve said and still don’t know where I Bogarted it from ‘Hospice saved my life.’

Robert Wood Johnson Foundation had a post ‘The Path to Palliative Care‘ which documents the December 1995 issue of Time magazine publishing the findings of SUPPORT the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Knowing When to Stop which to quote ‘American physicians often ignored the last wishes of dying patients and caused unnecessary anguish and stress’. The post points to the development of a robust palliative care movement in the US. As I’ve posted here before we have come a long way and many of us have benefited from palliative care and hospice but the data is clear there is more to be done. This movement and those who deliver it know how it makes a huge difference to both patient and family. Would they be investing so much and serving so selfishly if was not a winning proposition? 

Further in the Jaouad NYT article she says a friend Tweeted the following ‘I loath the term. It’s either exclusionary or overly broad. So I don’t define it, I avoid it’ The author ends the article by saying she will continue to figure out what surviving is. And that is a great conundrum to face.

Those who know and have experienced palliative or hospice care know it is a hard choice to make and accept. It is hard to travel that path but compared to the alternative it makes everyone a winner. Perhaps those of us who some feel are losers need to let them know we are not.

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.