New Fast Fact Released: FF #350 Palliative Care Issues in Glioblastoma

Fast Fast #350 has been released: Palliative Care Issues in Glioblastoma. Thank you to the authors, Roshni Abee Patel MD, Elizabeth Neil MD, and Sam Maiser MD, for the new addition to the Fast Fact library.

This Fast Fact addresses some of the unique care factors regarding the prognosis, symptom management, and advance care planning with regards to glioblastoma. For more general information about symptom management, prognosis and advance care planning, check out the Resources tab on the PCNOW website. PCNOW members will have access to multiple free educational materials within the Resources tab including an Advance Care Planning Quiz which can be an active way to assess and improve your knowledge and clinical skills in this subject.

New Fast Fact Released: #349 Catatonia

Fast Fact #349 has been released: Catatonia. Thank you to the authors, Richard Weinberg, MD, Daniel Fishman, MD, and Pierre Azzam, MD for the new addition to the Fast Fact library.

Cognitive changes are very common as seriously ill patients progress through the dying process. Such changes can come on abruptly and significantly compromise a patient’s ability to meaningfully interact with loved ones prior to death. Although delirium is the most common etiology for these changes in cognition and wakefulness, there are several neurologic conditions which can mimic terminal delirium. Catatonia is a neuro-psychiatric condition which can be mistaken for delirium. Because the treatment for catatonia is quite distinct from delirium. it is important that clinicians who care for dying patients know how to identify and treat catatonia. For more information on delirium, see Fast Facts #1, 60 and 160. Additionally, if you are a PCNOW member, go to the Resources tab on the PCNOW website. From there you should be able to easily find free lectures and educational materials about delirium on the “Improve Your Clinical Knowledge” and “Lecture Series: Clinical Topics” weblinks.

New Fast Fact Released: Treatment Options for Hepatocellular Carcinoma

Fast Fact #348 has been released: Treatment Options for Hepatocelluar Carcinoma. Thank you to Jonathan Kapke DO, for this new addition to our fast fact library.

Hepatocellular carcinoma is a common malignancy in the US and worldwide. It is associated with high 1 year and 5 year mortality rate. The treatment options for hepatocellular carcinoma are somewhat unique in comparison to other cancers as are the quality of life concerns. This Fast Fact provides an overview of the treatment options of hepatocellular carcinoma so that generalist clinicians and palliative care clinicians can offer better guidance for patients who suffer from this serious illness.

New Fast Fact Released: Fast Fact #347 The Role of Chaplaincy in Caring for the Seriously Ill

Fast Fact #347 has been released: The Role for Chaplaincy in Caring for the Seriously Ill. Thank you to Rebekah Schmidt for this new addition to the Fast Fact library.

This Fast Fact covers the roles and skillsets of board certified chaplains in improving the lives of patients with serious illnesses. Chaplains are crucial members of inter-disciplinary teams in delivering comprehensive care. If you are seeking more information on this topic, make sure to check out the Resources and Links tabs on the PCNOW webpage from where you will find additional resources on best practices in screening for and addressing spiritual needs as an inter-disciplinary palliative care team.

The “101” Palliative Care Encounter:  What is It?

Copious well-designed studies have confirmed the value of palliative care consultations for seriously ill inpatients and outpatients with a wide variety of cancer and non-cancer diseases. This has led to Palliative Care trigger projects and other integrated, system-based practice approaches to foster broader and more reliable access to palliative care consult teams earlier in an illness trajectory. But what does a palliative care consultation entail? Is it uniformly performed across all palliative care clinicians? Institutions? If you randomly plucked a palliative care clinician from a random institution in the US, would he or she be able to reproduce the palliative care interventions that were proven to be effective for metastatic non-small cell lung cancer patients in the often-referred to Temel study? For many referring clinicians, a palliative care consultation is imagined as a “black box” from which patients often emerge with new direction in care and a new symptom management plan. I worry that this creates a mystified sense of the work we do. After introducing yourself as a palliative care clinician, have you ever had a clinician say to you: “you must be such a special person to do what you do. I don’t know how you do it.”

I’ve heard such a phrase multiple times in the 10 years or so I’ve been practicing palliative care. Initially, I guess it made me feel a little warm and fuzzy inside. But after the honeymoon wore off, I now find myself bristling a bit if I hear comments such as this regarding palliative care work. Although I’m 100% convinced the work we do is needed, I am not 100% convinced our work is truly “special”. In fact, often I feel amazed that I get paid to offer what are often common-sense, big-picture assessments and recommendations to experienced clinicians, even specialists of patients with, yes serious, but also common-place medical problems. But more so, it is the last sentence of a comment such as this, that I find myself ruminating over in a very literal fashion. I think I’ve been misinterpreting the most plainly stated portion of a comment such as this: many clinicians aren’t marveling at our emotional stamina to the work in palliative care or marveling at our empathetic reserves, they really want to know, what do we do in a palliative care encounter.

I think there could be great benefit to our patients, clinicians, and the larger health care system if we can demystify our work. One step toward making our work more reproducible and understandable, would be to articulate what a “101” or basic Palliative Care Consultation should entail. Perhaps by doing so:

  • Referring clinicians and patients would have a better anticipation of the systematic process involved when palliative care teams make independent assessments and recommendations to address unmet palliative care needs.
  • Less experienced clinicians and clinicians-in-training may have better confidence and direction in performing palliative care interventions when rotating or onboarding on palliative care consultative teams.Documentation of palliative care consultations could be better standardized.

What do you think? Do you feel there is a need for our field to develop a more broadly referenced, agreed upon, and reliable guideline on how to do a Basic “101” Palliative Care Encounter or Palliative Care Consultation? Is such a goal achievable? If so, what do you feel should be essential components in a basic “101” Palliative Care Consultation?

Marla shares her experience after a loss of a loved one

This past summer my mother-in-law died after a long illness. At the end the family gathered to keep vigil, sharing memories and talking quietly to Mom to let her know how much she was loved. Although as a caregiver I have held the hands of many dying patients, this was different; this time I felt out of place, as if I had forgotten something important. Yes, I was sad, but why was I so…edgy?

As a nurse, I was accustomed to caring for the dying patient and their family. There was always a task to do…wetting dry lips, locating a box of tissues, praying with a patient or holding the hand of a grieving spouse. What does a caregiver do when someone else is doing those tasks? When there is nothing left to be “done”?

On reflection, I discovered that it is OK to simply “be” at the bedside. That just my quiet presence is enough to honor and respect the one I love. I have learned that it is important to take care of me…that it is necessary to grieve for the loss of that person’s presence in my life. And I have discovered that accepting the care offered by others helps them to cope with the pain that they feel, and helps me to heal as well.

Mom taught me much in life. As she died, she taught me to remember that it’s OK to step out of the professional role and simply be a family member. It’s not easy, mind…but it’s a necessary part of the grief process.

Blessed Be,

New Fast Fact Released: #346 The Transition from Pediatric to Adult Medicine

Fast Fast #346 has been released: The Transition from Pediatric to Adult Medicine. Thank you to Jenna E Frawley, Randy S Hebert MD, MPH for the new addition to our Fast Fact library.

Advances in medical care have allowed many pediatric patients with terminal illnesses to survive well beyond their second decade. Consequently, many pediatric patients with fatal illnesses now eventually must make a transition to adult medicine. This transition can be fraught with psychological and system based challenges which are addressed in this Fast Fact. Please stay tuned, for in the near future, we hope to offer a dedicated series of pediatric-related, palliative-care themed Fast Facts.