Skip to content

C. Andrew Martin

Reflections of a Loving Partner: Caregiving at the End of Life

Archive

Category: HPNA Blogs

People Living with HIV (PLWHIV) can now enjoy extended lifespans and may live with HIV as a comorbidity and not die from AIDS and its opportunistic infections, as was once common with an AIDS diagnosis. Because of this dramatic shift in HIV disease over the past two decades, this afternoon I had the privilege of attending a home wedding between two of our clients.

This particular wedding was especially notable by the fact that it was between two men who have been a couple for twenty-eight years. Both men are HIV-positive and one is on hospice care. This wedding was the first same sex wedding that our AIDS Service Organization (ASO) in Central Texas has experienced between two clients since marriage equality went into effect on June 26, 2015. The hospice chaplain officiated the ceremony and the witnesses were the hospice social worker, two ASO Medical Case Managers, the ASO Patient Navigator, and myself, their RN Medical Case Manager. This wedding was a joint effort between the hospice agency and the ASO and took many months to bring to fruition. Why so long? There were so many barriers that first needed to be overcome: social, economic, legal, and physical; and we, as an interdisciplinary team from both organizations, were able to overcome the roadblocks and facilitate this long overdue life cycle event.

In my current role as RN Medical Case Manager at AIDS Services of Austin, Inc. (www.asaustin.org), I work with HIV-infected individuals, supporting them in HIV medication adherence and retention in HIV primary care. These two simple goals of medication adherence and retention in care can transform HIV/AIDS from a potential death sentence (as we commonly experienced in the 1980s-mid 1990s) to a chronically managed disease. With daily HIV medication adherence, the HIV viral load can become suppressed to less than 20 copies/mL, allowing the CD4 T-cell count to rise above 200mm3, potentially preventing the development of the opportunistic infections (mycobacterium avium complex, pneumocystis pneumonia, cryptosporidium, and toxoplasmosis to name a few) that were so common early on in the AIDS epidemic. The year 2015 marked the first time that there were more individuals aged 50 and older living with HIV than individuals under 50 years old. Consequently, we, as hospice and palliative care clinicians, will be experiencing an increasing number of hospice and palliative care patients who will have HIV as a comorbidity, rather than as the hospice primary diagnosis.

Circling back to the wedding couple and looking at their comorbidities in reference to HIV and aging, one partner (age 55) was HIV-positive, diabetic, hypertensive, and reports chronic pain and neuropathy; the other partner (age 62), who is currently on hospice, is HIV-positive, diabetic, has cardiomyopathy, and is post stroke. The hospice partner was admitted to services under a heart disease diagnosis: no longer a candidate for surgical procedures and has an ejection fraction of <20%. Because he has been on HIV antiretroviral therapy (ART), he is virally suppressed and consequently does not present with any of the listed guidelines under a HIV primary diagnosis.

Because of HIV medication adherence, retention in medical care, and the highly effective new cocktails of HIV medications, I have witnessed this dramatic change in the lives of PLWHIV over the past two decades. An HIVAIDS diagnosis is seldom a hospice primary diagnosis, as it once was. Because of this shift, I look forward to attending many more life cycle events, with our HIV-infected clients, as they live longer with HIV and approach old age; life cycle events that, decades ago, HIV-infected individuals never dreamed they would live long enough to enjoy.

We oftentimes initiate discussions about advance directives and then assist with completing them at end-of-life during our work in hospice and palliative care; however, an advance directive dialogue is something that need not wait having during the urgency of end-of-life care. As clinicians, we should be initiating these conversations daily with everyone, regardless of age and whether or not there may be a terminal illness diagnosis. Not only should we be having these discussions with our clients and their families, but also with our own families and friends.

So how can we become advocates for promoting advance directives? As a hospice professional, first assess your knowledge and comfort level with having these discussions with clients and families; and, equally important, have you completed your own Advance Directives? Then, one way to advocate is to participate in the upcoming National Health Decision Day (NHDD) on April 16th 2015. If you have not yet planned a NHDD activity, I encourage you to go to their website: http://www.nhdd.org/. Choose to Join the NHDD Team, Get Your Advance Directive, or Organize Your Community. A NHDD event can also be a rewarding experience for HPNA Chapter Leaders to plan and implement to educate their communities.

Having personally lost two parents and one parent-in-law to unexpected, sudden deaths over the past decade, I know, firsthand, the importance of having advance directives in place, regardless of age or health status. I invite you to read my recent article, Promoting Advance Directives and Ethical Wills with the HIV-aging Cohort by First Assessing Clinician Knowledge and Comfort Level, published in the March-April 2015 issue of the Journal of the Association of Nurses in AIDS Care. This link has free viewing until March 29, 2015: http://authors.elsevier.com/a/1QVL-_N-jB6PwK.

After reviewing the article, let’s have a dialog here about advance directives and ethical wills. I look forward to hearing about your ideas and plans to join the advance directive advocacy movement on April 16th’s National Health Decision Day!

 

Is your organization a Partner Organization in the StoryCorps Legacy project (http://storycorps.org/legacy/)? “StoryCorps is one of the largest oral history projects of its kind, and millions listen to broadcasts on NPR’s [National Public Radio’s] Morning Edition and at www.storycorps.org” (StoryCorps, 2011, p. 1). Many mornings on my drive into work, I hear snippets from StoryCorps recordings that move me in unexpected ways; and I never thought that I would have a story that was worthy of being recorded for StoryCorps.

However, that perception recently changed. My husband, Lev, who is also a hospice and palliative care nurse, works at Hospice Austin in Austin, TX. Their organization is a Partner Organization with StoryCorps and they were recruiting staff, volunteers, and patients/families for stories to record for the StoryCorps Legacy project.

StoryCorps Legacy encourages and supports the act of reminiscence for people with serious illness and their families. The program offers participants a way to celebrate the lives of loved ones with generations to come. StoryCorps partners with a variety of organizations including hospice care, palliative care, and disease-specific organizations. Legacy staff trains and prepares Partner Organizations to incorporate the interview experience into their existing services and to conduct and record interviews using equipment provided by StoryCorps. (StoryCorps, 2011, p. 1)

Lev completed the StoryCorps Legacy application to record both of us with our end of life care stories and his application was approved to move forward. The trained StoryCorps Facilitator came to our home one evening with her recording equipment. She explained her role and the recording process and completed some initial, basic, personal information paperwork. I was surprised to learn that the StoryCorps Facilitator would not be the interviewer; Lev would be interviewing me. We had not prepared any material for the recording in advance. However, the timed 40-minute interview flew by and the unprepared, stream-of-conscious dialog between Lev and me was recorded for future generations. Following the recording, the Facilitator took our photos and completed the release form that allows StoryCorps to keep one copy of the interview and archive another at the American Folklife Center at the Library of Congress. I, as the person being interviewed, will receive a copy of the recording and the Partner Organization, Hospice Austin, may also receive a copy for their library.

Thinking back on the experience, my StoryCorps Legacy recording went in many directions; some paths described my life, growing up, love, spirituality, hospice work, caregiving for a partner who died from complications of AIDS in the 1990s, the final days of parents and honoring their advance directives, remembrances of working with hospice patients and families, and the importance of leaving a legacy. That brief overview of topics is all the content of the 40-minute interview that I will share with you in this blog; if you are interested in hearing more, you should be able to soon search for it at www.storycorps.org, or perhaps it might be one of the few StoryCorps remembrances excerpted for future broadcast on NPR’s Morning Edition.

If your organization is not familiar with StoryCorps, and you might be considering becoming a Partner Organization, I encourage you to investigate this wonderful tool for documenting the legacy of your staff, volunteers, and patients/families. It appears that there are not many Partner Organizations currently participating in the Legacy project; in my newly adopted home state of Texas, there are only two Partner Organizations listed on the StoryCorps website: Hospice Austin (Austin) and International AIDS Empowerment (El Paso). If you have personally participated in StoryCorps, I would love to have you share your experiences in this blog!

References

StoryCorps. (2011). StoryCorps Legacy participant packet.

We, as hospice and palliative care nurses, are confronted with the mandate to maintain clinical competency. I have been an advocate for continuing nursing education throughout my career, oftentimes while in the role of Education Coordinator in the hospice and palliative setting. As adjunct online nursing faculty at Saint Joseph’s College and the University of Saint Mary, I am very comfortable in the online learning format; and as a student, I have completed a Master’s in Nursing/Education at Saint Joseph’s College and am finishing in May a Doctor of Nursing Practice (DNP) at Carlow University via the online format. There has been a shift in pedagogy from the teacher-centered model to the learner-centered model to the subject-centered model. It is upon ourselves to engage in self-directed learning and stay current with our practice. Accessing online continuing education offerings is one way to do so and has many advantages; and HPNA offers a rich catalog of E-Learning courses to access for continuing education.

In order to be an advocate for the HPNA E-Learning format, I believe that I must first experience the HPNA E-Learning course content in order to promote it to others as an online learning format to achieve provider approved, continuing nursing education (CNE); therefore, I am on an HPNA E-Learning roll! My goal for 2016 is to complete as many courses in the HPNA E-Learning Catalog as I can. This may appear to be a daunting endeavor, as there are currently over sixty online, on demand courses offered in the HPNA E-Learning course library. However, by devoting three to five hours/week, I should reach my goal during a three to four month period. When and where will I find the time to complete this self-directed, self-learning task? My plan is to sign in to a course during an occasional lunch break and perhaps during an evening or weekend when sitting in a coffee shop or outdoors on the patio in the back yard. All I need is my laptop and a WiFi connection to access the course. E-Learning offers so much flexibility in my busy professional and personal life.

So why have I set such an aggressive personal educational goal? First CNE, via the HPNA E-Learning catalog, provides the contact hours required for RN relicensure every two years (contact hour requirements vary by State Boards of Nursing); and, second, it offers provider approved contact hours required for the Certified Hospice and Palliative Nurse (CHPN®) recertification process, every four years, through the Hospice and Palliative Credentialing Center’s CHPN® Hospice and Palliative Accrual for Recertification (CHPN® HPAR). However, seeking CNE not only counts toward these obligations, but, more importantly, by actively participating in CNE keeps me abreast of current clinical issues and healthcare trends, as an obligation of my professional nursing development.

Where am in this HPNA E-Learning CNE process? As of today, I have taken twenty-five of HPNA’s E-leaning courses, leaving at least another thirty-five courses to access. From the twenty-five, diverse content courses that I have so far experienced, I would definitely recommend them to my colleagues; therefore, I strongly suggest that you take a look at the HPNA E-learning catalog today, as it is one of the many benefits of HPNA membership (Log into Members Only for access to HPNA’s E-Learning Courses. You must access the HPNA E-Learning courses from the E-Learning link on the member’s only page to have course content access). The HPNA E-Learning courses are free to HPNA members, HPNA is accredited as a provider of CNE by the American Nurses Credentialing Center’s Commission on Accreditation (ANCC); and upon completion of each HPNA E-Learning course, your personal CE Tracker can be updated so that you may then use your CE Tracker list of courses to update your HPAR CourseBuilder file for recertification. This process makes recertification every four years so much easier!

My burning question to you: Are you currently taking advantage of this HPNA E-Learning educational benefit? If not, I challenge you to sign on to one of the HPNA E-Learning courses today and jumpstart your path to professional hospice and palliative care continuing education. I look forward to hearing your thoughts and responses regarding this valuable educational resource.

Shake it out, shake it out, Shake it out, shake it out, ooh whoa Shake it out, shake it out, Shake it out, shake it out, ooh whoa And it’s hard to dance with a devil on your back So shake him off, oh whoa -Florence + the Machine, lyrics

Two Certified Hospice and Palliative Nurses (CHPN®) live in our household. One major benefit of this is that we can both come home from a long day’s work to someone with whom we can share our days and “shake it out”, receiving and giving support and empathy for the hospice and palliative care work that we both do in our community. Rather than be sole author of this blog entry, I invited my husband, Lev, to co-author a story, sharing a local act of caring compassion from a global celebrity, recently performing in Austin, TX, who made the time in her busy performing schedule in our “Live Music Capital of the World”, which consequently made an immeasurable difference in a teen’s short lifespan. Here is Lev’s story:

 

One of our teen hospice patients, at Hospice Austin’s Christopher House, had given up her treasured concert tickets last week due to the weakening state of her health. In short time, her mother, our hospice staff, and Florence and her “Machine” arranged to have the band give a private concert in her room at the hospice house, with Florence sitting and singing on her fan’s bed. For 45 minutes, this young cancer patient was lifted out of her illness into one of the sweetest times we have shared at Christopher House.

Not only was the gift given to our patient, her family and friends, but also our hospice staff experienced the power of teamwork and generosity that comes from doing this important work. Thanks to a well-oiled interdisciplinary team, this teen’s dream was made real. A week later, the teen is still riding on the wave of the “miracle” she experienced that day.

 

Here is a brief glimpse (with all the legal authorizations in place) of that concert. I hope it moves you in your work, as it did us. https://www.youtube.com/watch?v=Uzw7MOBS9lg

Lev Baesh, BSN, RN, CHPN®

Hospice Austin: http://www.hospiceaustin.org/

I hope that everyone takes the time to view the above link to Florence + the Machine’s visit to Hospice Austin’s Christopher House to experience this “miracle”; and I look forward to reading your reactions to this story by sharing your comments with our blog readers (you may like or comment by either clicking on the like icon or the comment icon found in the upper left sidebar). Shake it out!

Andrew Martin, DNP, MS, RN, CHPN®, ACRN