Barbara Rogers, MSN GNP

This user hasn't shared any biographical information


Posts by Barbara Rogers, MSN GNP

Gratitude: Service of Rememberance and Celebration

What a wonderful way to celebrate and remember all of us who care for our patients. The theme brought us back to Mother Earth as we are in the beautiful setting of Vancouver where we all are here to support each other. The symbol of the tree was used in several ways from the tree created during the conference by those attending and remembering those dear to them and also on the front of the handout with the Arbutus Tree (Madrone) which holds the tile of most sacred to inhabitants of this coastal region. I think the tree even though it looks like they stand alone are actually connected in many ways. And so are we.

I especially enjoyed the celebration because of it’s emphasis on gratitude. I think in the hard days we face and the many challenges, many of them discussed during the conference, that we remember to return to ourselves and be grateful. To have gratitude as we complete our day for the work we are called to do. Grateful for the sun that warms us, the ground we walk on and the air we breath. To also cherish our heritage personally and united as presented by Gabe George and Carleen Thomas from the Tsleil-Waututh Nation meaning “People of the Inlet”.

Gabe shared with us the loss of his brother from HIV and how he learned that healing is best done through song. Carleen and Gabe shared many songs with us and the healing in the room could be felt.

Patrick Clary also shared with us his healing journey which has taken many years and started in his youth with his magpie.

In a unique experience, often we share our monetary offerings, but what we received was a gift made by Kelly Two Wolves (she was introduced to us in the earlier plenary session). The beads represented the North (Red), West (Black), South (White) and East (Yellow) and the representation of the colors of the human race. The beads were presented in a bracelet, circular, joined and never ending showing we are ALL connected (related). This reminded me of another practice I learned this year, The Medicine Wheel.

In closing we joined in the Aztec Prayer of Community.

Only for so short a while, O God,

You have loaned us to each other.

Because we take form

In your act of drawing us.

And we take life

In your painting us.

And we breathe

In your singing us.

But only for so short a while

Have you loaned us to each other.

Thank you for this wonderful experience.

Discontinuing Treatment in Patients with End Stage Illness: The Art and Science of Reconfiguring Therapy

A very engaging conversational topic was presented.

Some key items to be considered at this point in a patient’s illness:

  • Ambulatory, Palliative, Hospice or Comfort Care
  • The Goals of Care as described by the patient/family
  • Clinical Expertise
  • Best Practice Evidence

Barriers may include:

  • Patient Related: psychological attachment to medications they have been taking as well as families perception of effectiveness
  • Clinician Related: Concern about patient’s/other clinicians resistance to change; Prescribing as a social expression of caring and concern
  • System Related: Lack of data to support discontinuation of medications no consensus

Consider diagnosis and disease trajectory and when reviewing medications the:

Indication

Risks

Benefits

Consider first stopping OTC medications (remember patients thoughts about quality of life)

What are your thoughts about inhalers and nebulizers?

Do you sometimes feel the need to change their minds and convince them, negotiations???

Would early palliative care maybe help in later decisions about care goals and later discontinuation of medications?

Cost and effects of medications and some of the touchy ones such as Aricept and Namenda when families want the patient to still recognize them

Three thought provoking cases were presented that might also generate good discussions in your own teams. It did in our session. No right or wrong answers but a good way to determine for your team are best to support your patients.

Compassion in Canada

Sometimes when you think outside the box with the right intentions, things happen for the good. The session “Showcase Canada: Introducing Canadian Initiatives in Hospice Palliative End-of Life Care was a great overview of such a vision. The presentation was dispersed with great facts about Canadians and great pictures of many areas I want to add for my next trip.

In Canada, the current median age is 40 and the life expectancy is 81.29 years with 80% of the population living in an urban area. Health care is publically funded with very little private insurance. Did you also know that Canadians like to talk about famous Canadians such as Justin Bieber? Baby, Baby, Baby OH or is that eh?

Interestingly I took a trolley tour of Vancouver yesterday, the tour guide spoke of how he is covered by his wife’s medical plan and that if he had to buy insurance it would only cost him $110.00 per month and all things are covered including medications. He stated even surgery for any diagnosis. I have not formally checked this, but this made me wonder, how can this be possible?

I was intrigued because in many conversations in the United States we compare ourselves to this system and currently in a health care reform period. So how can you cover someone for $110 a month and they feel supported and cared for according as my trolley driver? I am open to discussion.

In 1990, the Canadian Hospice Palliative Care Association was established and in 2004 Compassionate Care Benefits were enacted, a Canadian federal program providing income for caregivers. It has limitations:

  • Limited to 6 weeks; and
  • patient should have 6 month diagnosis; but
  • the benefit can be used by multiple family members.

A Canadian national program allows a 6 week paid leave by the employer but no protection for the job, different from those who live in the United States who can apply for FMLA (Family Medical Leave Act) which is a 12 week program that does not pay for your time away from work, but does protect your job. There is also another program (at least in California) CESLA which allows for use of sick time (percentage) and not vacation time, to be away and care for family members. The CESLA program was unknown to me until I needed to care for my father last year and is not just for end of life care. It appears no matter where you live there is no perfect answer but that there are different levels of support. I think many programs are not known about until the need arises which makes our understanding and knowledge of these programs even more important to help families care for their loved ones.

I think with all the efforts put forth and as we try different options outside the box, we will someday be able to provide such support. I think this supports the palliative care programs as they try to bridge the care of patients from diagnosis to death. In the meantime, Canada has an online resource for that provides “Support and information on palliative and end-of-life care, loss and bereavement for patients, families and health care providers” at www.virtualhospice.ca. Part of the website has an “Ask the Professional” where anyone can ask a question and within 3 days receive an answer. Check it out. You can also follow their efforts on Facebook as well with the continued development Their efforts continue with the expansion of their Model to Guide Hospice Palliative Care to now include pediatrics.

Thanks to Vancouver for hosting the conference and for sharing their hard work.

Glad to be back as a blogger this year. The upcoming conference looks amazing and the bags are packed.

Weaving Connections

After a busy conference schedule it was wonderful to walk in to the Weaving Connections – Service of Remembrance & Celebration and be greeted by the wonderful music of Trillium. Trillium is a group of volunteer singers from Vermont who harmonize their hearts for patients in their homes, hospitals and nursing homes. I was so moved by their voices, that I was reminded of one of my favorite quotes that is prominently displayed in the home of my mother in law which simply states, “Singing is like praying twice.”

The gathering, as shared by Dr. Christina Puchalski who personally had several losses this past month, reminded her about how the sharing of our losses together by our community allows them to help restore our balance and give us a place to heal as we mourn. Remembering and sharing in our communities helps to weave the compassion and return some wholeness to the empty voids of pain when we experience loss. The community helps hold us while we grieve and they help us to remember the gifts we have received from our loves ones or patients in the celebrations and stories we share.

Dr. Rachel Naomi Remen who I felt honored to be in her presence quietly and with great love and compassion shared with us the thought that sign language is more than words, it’s a whole body experience. She then shared and taught us in sign language a small recipe e could carry with us that loving ourselves is important as well.

Trillium closed the service with a song from South Africa about Peace and their last piece called “Here Is My Home.” I think we could have listened to them all night and it was a while before people wanted to leave. The most beautiful thing I heard after the service was someone expressing the celebration filled them up again and that if you missed it, you may have missed one of the best sessions of the day. I was in total agreement. I am glad this was included in the program.

What children learn about death

I had not originally thought to attend this seminar, but my NP colleague had expressed an interest in attending this session. Mostly because some of the patients we are seeing now are younger with children and ask for how to explain death to their children. Is there a good resource?

What a great presentation of the films children see and the depiction of death. A couple of facts that were stunning to note were that in the films presented, characters mostly die by falling. Check it out,: Lion King, Snow White, Beauty and the Beast to name a couple. The music in the films also sets the tone for the film as well. The music can change the moods as we move through a movie, often not needing words at all. Remember the scene in Bambi? Go back and as your watching this, listen as well.

The presenter Marianne Matzo was playful as well as expressive in her own experiences as a child growing up and the impact these films had on her.

Many people I spoke with after her presentation shared their excitement of her presentation style which included humor, fact and film clips. It was a pleasant change from the intellectual presentations (no tomatoes please because we need them as well) and her slides were filled with color and whimsy. I would like to see a few more presentations like this in the upcoming conferences. Thanks Marianne.

Just Being

Makowski and Epstein presented a wonderful explanation of the differences between mindfulness and mindlessness.
Mindfulness is purposeful with attention to one’s own mutual process during every day work with the goal of practicing clarity and compassion. I have to admit that being present totally takes a lot of work some days and the component of clarity sometimes comes after careful reflection. They talked about “attentive observation, critical curiosity and a beginner’s mind which is always open to the possibilities” as a great way to enter each conversation and meeting we have with our patient’s and their families. I found this reassuring because every meeting to me should not be a continuation of the ones before but a new story never told before because each person we encounter is unique.

Mindlessness as presented was a “tendency of the mind to seek premature resolution.” I do not feel it is our purpose to seek resolution but to facilitate. It was wonderful to see the reminder of music and art as a way to facilitate the mindfulness. It was introduced as a possible way to create harmony out of chaos. I think would be a great way to set the tone and bring a commonality to the purpose of our meetings, a baseline of sorts to be with and move from.

I was introduced to the term of “exquisite empathy – highly present, sensitively attuned, well boundaried, heartfelt empathic engagement.” The challenge of this for me is the continued work of knowing myself. In this work that we do, I find this an ever evolving and constant work that brings a more honest and heartfelt engagement and presence with everyone I meet in my day, and the welcoming of all the emotions that come in the family meetings, interactions with other staff, and the support required to do this work.

The take home message for me was that “empathy is emotional labor.” I had never thought of it in this way but it certainly explains why exhaustion can come from the patience and willingness to step into the world of our patients and the experience of just being.

The only way to remain mindful is to practice. How much mindfulness practice do you need? For me I want to practice this everyday by remembering to slow it down, be present, listen well, be open to accepting, and forgiving with all that I am. Will you join me?

Barbara Rogers, MSN

Contemplative Interventions

In looking at the gifts we have been given that we have not opened yet in our everyday activities and practices, it is good to still ponder with awareness that there is something else possible. In doing so I had not thought about bringing in the meditative practice not only for myself but for my patients. In the meditative process the practice of honoring the comfort from the silence can be very powerful.
In this session I became aware of the “May I” phrase. May I extend comfort and empathy to you? May I share with you love. By asking may I, it feels like an invitation to join in instead of talking at the person.
I was also moved by a new tool in the boxes we carry in ourselves that I was introduced to during this session. The simplicity of the pulse. I ask you the question, have you ever taken the pulse of someone not for its clinical value but to connect in a mindful way?
Have you ever taken your pulse? What is it telling you right now? Can you see anyway this could help in your daily practice as a meditative way to help mindfully recenter yourself?
I can see in the middle of a busy day the benefit to sit for a few minutes in a meditative way taking my pulse and being mindful of where I am and what I am feeling. This may be enough of a break in a busy day to reduce the stress of what I do and reduce the burnout that comes from some of the stressful but beautiful work we do.
Barbara Rogers, MSN