Caring for the Front Line

A collage of four RVNAhealth front line employees wearing their personal protective masks
for the professionals who have spent their days and nights caring for COVID-19 patients, on top of their own loved ones, grief and stress can run strong. RVNAhealth Hospice Social Worker Jana Wu, LCSW, LADC, leads support groups to help front-line workers navigate their feelings and dedicate a little time to themselves. .Continue reading

There’s No Crying in Hospice

This essay was written by Keri Linardi, RN, BSN, PHN, CHPCA, chief clinical officer at RVNAhealth. In her role, Linardi oversees all of RVNAhealth’s clinical service lines – home health, hospice, rehabilitation, and community health — as well as the Quality Assurance and Performance Improvement teams. Continue reading

Hospice Music Therapy Provides Comfort and Memories

RVNAhealth Hospice Music Therapist Tammy Strom strums her guitar.

Above: Tammy Strom, MA-MTBC, plays her guitar at RVNAhealth’s headquarters on Governor Street in Ridgefield.

When Tammy Strom, MA-MTBC, visits RVNAhealth hospice patients, she’s equipped with a distinctive set of clinical tools. A guitar. Piles and piles of sheet music and songbooks. And a variety of handheld musical instruments (think tambourines, shakers, bells and other fun accessories).

As our hospice music therapist, Tammy also brings healthy doses of compassion and positivity, alongside a dedication to helping patients experience the best possible quality of life in their final months, weeks and days.

“Many people have the misconception that working with hospice patients is somber,” she says. “But as a music therapist I get to see, and be a part of, a lot of life and creativity.” 

Individualized Goals and Approaches

When hearing the term “music therapy,” you might think of listening to music performed by someone else. Or the opportunity for a patient and perhaps the family to play, sing or even write songs. The reality is that it depends – on what goals are appropriate for the patient and family. 

Tammy shares how, in the case of a patient who had difficulty speaking, the simple act of slowing down a beloved song so she could sing brought “great joy” to both the patient and her family.

“If you’re with them for several months, as their condition progresses, it might be more about soothing with music that carries meaning,” she adds. She recalls this being the situation with a patient who was no longer alert, but the husband requested their wedding song from long ago.

“Musical interventions aren’t about being note-perfect, and it isn’t about teaching music,” explains Tammy. “It’s focused on providing comfort and memories. The goal might be to alleviate isolation; help a family connect with a patient who is unable to speak due to dementia; or distract from the patient’s physical discomfort or soothe the emotional pain the patient and family are experiencing.”

Music therapy can also be used as a restorative therapy in the bereavement process, especially with children mourning a loss.

The Science Behind Music Therapy

Hospice music therapy is administered by a credentialed professional who has completed an approved music therapy program and passed a national exam offered by the Certification Board for Music Therapists. In addition to being board certified in music therapy, Tammy holds a master’s degree in expressive therapies with a concentration in music therapy and mental health counseling.  A lifelong musician, she has sung with the Ridgefield Chorale for two decades, and has performed with Troupers Light Chorale in the past.

“Music stimulates many parts of the brain – from auditory to motor to emotional – and it is often one of the last memories to remain intact,” she stresses. “Many studies have found that music therapy positively affects patients’ quality of life by addressing their spectrum of needs: Physical, psychological, emotional, spiritual, social and family support.”

Also, as she is fond of saying, in the words of Hans Christian Andersen: “Where words fail, music speaks.”

Read More Hospice & Palliative Care Month Articles
Hospice is for Living
How Spiritual Care Providers Help Hospice Patients and Their Families

Hospice is for Living

The following essay was written in 2019 by Keri Linardi, RN, BSN, PHN, CHPCA, Chief Clinical Officer of RVNAhealth.  Keri is, has been, and always will be a hospice nurse — in addition to the other roles she assumes. Hospice care is part of Keri’s being, part of her heart and the key to how she approaches her life.

This month, November, is Hospice and Palliative Care Month. In her words below, Keri shares her perspective on how hospice has impacted her and her children’s lives, and what we can do this month to plan for our own futures. 

Children raised in the home of a hospice nurse, like me, live in a world where death and dying, and ending suffering are talked about freely. During my years of night shifts, my young children would ask over breakfast, when I returned home, how many people had died last night, and we would talk about the beautiful deaths I was privileged to bear witness to.  

Keri Linardi, RVNAhealth CCO, with her children, from left, Antonio, Trevor and Tiffany, standing under a tree in front of a beach.
Keri Linardi, RVNAhealth CCO, with her children, from left, Antonio, Trevor and Tiffany.

Some of the stories were funny, like the husband who called me when his wife had passed in the middle of the night, only for me to discover, when I touched her and she sat up, that she was still very much with us. To the ones that touched too close to home, like the children near to my own children’s ages, so that when I went to the car after leaving their homes, I sobbed uncontrollably for what seemed like forever, for a life lost too soon and for families who would have holes in their hearts that would never be repaired, just healed with memories over time. 

We are a country that has plans for everything from birth, to vacations, yet we don’t plan for our own mortality. Dying sneaks up on families and throws them into decision making in moments of crisis — a time when decisions should not be made! 

Honoring Wishes Versus Making Decisions

Being a child of a hospice nurse is a double-edged sword: we never hang up the phone without saying ‘I love you;’ I have never sweated the small stuff with them, you want magenta hair?, it’s your head,  go for it! The flip side is we talk about mortality – particularly my own — over family dinners. This bothers my children a little, now ages 22, 19 and 13, but I need them to understand in simple terms what my wishes are if anything were to happen to me, and I need them to know that they will not be making decisions but simply honoring my wishes, decisions I have already made.  They also fully understand that dying is a natural part of living, the circle of life.  

In times of crisis, these ‘already-had conversations’ can be the greatest gift you give your loved ones, the gift of them knowing exactly what you would want to do.  The gift of them knowing that they are not making the decisions for you when you aren’t able, they are honoring you one last time by following your wishes.

As a hospice nurse, who has seen families grappling with decisions at critical times, this is a gift I would like everyone to give their loved ones.

But we aren’t there yet.

In this country we have disparities in care that interfere with individuals’ abilities to access hospice care when it is needed most. A study from Duke University in 2018 outlines that African Americans, 13.4% of the population, make up only 8% of hospice patients in America and are more likely to suffer from untreated pain; Hispanic patients, who represent 18.3% of the US population, make up 7% of hospice patients nationally. There are cultural barriers that interfere with their access to hospice care.   

We need to work together to change this and to provide culturally competent care at the right time – and we need to dispel the many myths around hospice care. 

The hospice Medicare benefit is a six-month – approximately 180 day — benefit of care that provides support from a whole team of professionals who wrap themselves around the patient and family to help them through one of the most challenging times of their lives. In my 26 years of nursing, I have never had a family tell me they came on to hospice too soon. I have had many families tell me, “If I had only known what hospice was, I would have called sooner.”

Care, Comfort and Treasured Moments for Patients and Families

Despite the 180-day benefit, the national average length of stay for hospice care in the country right now is 21.5 days; for the state of Connecticut it is 14 days.  This means that as a state, we aren’t doing a very good job at acknowledging life-limiting conditions head on — in a direct, kind, caring manner.  We are introducing hospice care too late in the process and we are denying patients and their families care, comfort and treasured time when they need it the most.

Often when hospice is offered as an option, it is presented in negative terms – “There isn’t anything more to do;” Do not resuscitate,” — when in fact there is a lot of living and a lot of joy that occurs in hospice.

When life-limiting conditions occur, we in hospice care talk about allowing natural deaths, managing symptoms, and living every day to its fullest. Imagine if you knew you only had six months left to live — would you do anything differently?

Hospice care has filled my cup these past 20 plus years in nursing. I am appreciative and grateful to the patients whose hands I have held; to those whose windows I have gazed out of, together enjoying their favorite hydrangeas; the families whose strength and grace I have marveled at as they cared for their loved ones through to the end. The kindness they have shown me as guests in their home.

I am amazed daily at the wonderful team of hospice people at RVNAhealth that come to work and give of themselves every day for our community and patients and families.  And to you, our RVNAhealth hospice families. I am in awe of you and thank you for allowing us to be guests in your home and into your lives during this very private time. I honor you during this special month.

In closing, I would encourage anyone who has not yet started their Advanced Care Planning conversations to use this November as your springboard to make the move! Start the conversation about Advanced Care Planning, visit our hospice and palliative care team at RVNAhealth. Let us help you start the conversation during non-crisis times. We have educational handouts to guide you, as well as team members to speak with. Nobody has ever regretted the decision to plan in advance. On the contrary. It’s a gift to yourselves and your loved ones.

To learn more, contact 203-438-5555 or visit our Hospice Services page.

Read More Hospice & Palliative Care Month Articles
Hospice Music Therapy Provides Comfort and Memories
How Spiritual Care Providers Help Hospice Patients and Their Families

How Spiritual Care Providers Help Hospice Patients and Their Families

Hospice chaplain holding hands with hospice patient

November is National Hospice and Palliative Care Month. Hospice is a service that helps keep those diagnosed with a life-limiting condition and prognosis of six months or less – and their loved ones – as comfortable and peaceful as possible in the patient’s final stages of life. But many myths surround hospice. For example, hospice is not a place. It is not just for cancer patients. And hospice has no religious affiliation.

Here, we address the latter misconception with a look at
the role of the hospice chaplain.

On this rainy fall afternoon, RVNAhealth’s spiritual care coordinators, Carolyn Legg and Josh Smith, M.Div., have visited several patients and their families across the 35+ towns where our agency’s hospice services are offered.

Though they serve in the same role, they generally only see each other once every two weeks, when the interdisciplinary hospice team (which includes a medical director, registered nurses and social workers) meets.

The job title that they share reflects how their role is not about religion.

“It’s about helping patients and their families find peace
and comfort in their final days,” Josh explains. “Some of the patients I see
are very religious, while others have absolutely no interest in matters of
faith. Their faith (or lack of) informs our conversations. Fundamentally,
spiritual care is about where you find meaning and purpose in life.”

Spiritual Care is a Required Hospice Discipline

Josh Smith, RVNAhealth Hospice Spiritual Coordinator

Josh Smith, RVNAhealth Hospice Spiritual Coordinator

Under Medicare guidelines, pastoral care is actually a required hospice discipline. Spiritual care coordinators must meet the patient and his or her family during the first five days of care. After that, patients have the right to decline spiritual care at any time. Carolyn and Josh visit most patients every two to four weeks, though some request their company more frequently.

“Some patients – even the very religious ones, are initially so physically uncomfortable, they can’t even think about pastoral care. They just want whatever it takes to alleviate the pain,” Carolyn explains. “But then once they get comfortable, they might ask for a visit. They have complete control.”

It’s important with patients at this stage of life, she
adds. “With illness, many people have lost all sense of control – control of
their body, their mind, and, as a result, their spirit. It’s hard, because a
98-year-old man confined to bed because of Parkinson’s still in his mind thinks
of himself as a 26-year-old.”

Spiritual care interactions focus on three major themes:

  • Spiritual pain: Pain that comes from the “hidden” areas of our lives, and can cause emotional distress, agitation and even physical pain.
  • Meaning making: What were the most meaningful moments in the patient’s life? What do you hope your legacy will be? Would you like your family and friends present when you die?
  • Grief processing: Working in conjunction with the bereavement coordinator, the spiritual care coordinators help patients and their families process grief about their illness.

Though the patients whom Carolyn and Josh visit have been
determined to have no more than six months to live, no two stories are alike.
“Some people have a great fear of their impending death, while others are just
so tired of being in pain, they’re ready to be done,” says Josh. “Some have
strong support systems of family and friends, while some have extremely
strained relationships.”

He also stresses that the spiritual care coordinator is there as much for families coping with a loved one’s deteriorating health as for the patient. “We build a relationship and trust with the family both during and after the illness,” explains Josh. “For up to 13 months after the patient’s death, under the guidance of the bereavement coordinator, we provide bereavement support to ensure that their emotional and spiritual needs are being met.”

Read More Hospice & Palliative Care Month Articles
Hospice is for Living
Hospice Music Therapy Provides Comfort and Memories