Bereavement Support for Families and Loved Ones

Coping with the loss of a loved one is a particularly difficult situation. Faith Presbyterian Hospice not only provides social, psychological and spiritual support for patients, but also for family members of all ages.

“A lot of our support is educational in nature,” explains Valerie Sanchez, director of bereavement and integrated therapies at Faith. “We provide the comfort and information necessary for people struggling with anticipatory grief and the what ifs of losing someone they love. We’re also there for them as they adjust to life without their loved ones.”

Relationship building is a key component to the success of the bereavement program at Faith. Team members work tirelessly to establish trust with patients’ families and their loved ones through constant communication and transparency.

“Being straightforward and getting to know a patient’s family and inner circle on a personal level goes a long way,” says Sanchez. “We minimize regrets and maximize positive experiences by keeping them fully informed throughout the process and helping them ensure nothing is left unsaid. Once that fateful day comes, they’re open to communicating with us and taking advantage of the programs we have in place to help them through the mourning period.”

Some of these programs include:

  • Child and Family Bereavement – Loss poses unique challenges when children or grandchildren are involved. This program uses play therapy and music to help young people understand and manage grief. Support is provided by an interdisciplinary team of child life specialists, social workers and bereavement coordinators.
  • Camp Faith – Every August and December, Faith offers a day camp where surviving family members can explore creative ways of overcoming grief.
  • Faith and Grief Groups – Family members and loved ones meet periodically for discussions on how to best cope with grief in their day-to-day lives. Bonding with people in similar predicaments can help alleviate feelings of loneliness and isolation.

“The first year without someone is usually the hardest, especially as people commemorate anniversaries, birthdays and holidays,” explains Sanchez. “We reach out to them every two months just to check on how they’re doing and to offer comfort and support whenever needed.”

Sanchez notes that there’s no time limit on grief, and major life changes or the loss of additional loved ones can trigger memories and grief reactions. People are encouraged to reach out to Faith’s bereavement support team or to attend its support groups whenever needed, no matter how much time has passed.

“Grief doesn’t happen in nice, orderly phases or stages, and it doesn’t necessarily go away,” adds Sanchez. “The level of intensity and emotion fluctuates, and we’re always there for you whenever it gets overwhelming.”

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Bereavement Support for Patients

In addition to the physical discomforts of terminal illness, many hospice patients face severe emotional strain. Approaching the end of life is a heart-wrenching process, so patients require strong social, psychological and spiritual support as they endure their final days or months.

“Our hospice program is designed to ease the grief, loneliness, regrets and fears that accompany the end of life,” noted Valerie Sanchez, director of bereavement and integrated therapies at Faith Presbyterian Hospice. “We nurture inner peace by offering patients companionship and spiritual nourishment, and we try to help them ensure nothing is left unsaid.”

To achieve this goal, Faith relies on an interdisciplinary team of caregivers. In addition to physicians and nurses, patients have access to social workers, chaplains, bereavement counselors, volunteers and many other support resources. Each team member brings unique skills to help patients navigate life and death’s uncertainties more smoothly.

“We’re here for them every step of the way during this final chapter,” said Sanchez. “Uplifting their spirits is key, and our team members have the training and experience necessary to best approach this sensitive subject.”

Preserving special memories and leaving a meaningful legacy for loved ones are also crucial needs for hospice patients. Faith helps take care of these needs through its Memory Making and Legacy Building Program, which offers patients various avenues for self-reflection. Among them are:

  • Life Reviews – Faith produces video and audio recordings of patients’ personal stories, memories and messages as keepsakes for their loved ones.
  • Faithful Hands – Patients have the option to create side-by-side paper prints or plaster cast sculptures while holding hands with a loved one. These simple, intimate moments can be cherished for years.

“It all begins with personal conversations with patients,” explained Sanchez. “We talk to them about important events such as graduations and weddings, and even use pictures to help them open up about their lives. Patients are usually willing to share with us the many wonderful memories they cherish.”

Every hospice patient is unique, and Faith Presbyterian Hospice is always cognizant of family dynamics, age, religion, educational and professional backgrounds, and other key attributes while going through this process.

Sanchez added, “Time is one of the most valuable assets we have, and we want to make each of those moments matter. Our goal is to help our patients understand and accept a difficult situation. From there, we can start building a record that will be treasured by those they leave behind.”

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Benefits of a Hospice Center

A core component of hospice care is the firm commitment to nurturing patients and their families. With this goal in mind, it’s important to understand the two types of patients hospice centers typically serve:

  1. Individuals on a general inpatient level of care.
    These patients can only receive care within an inpatient setting. Care can also be administered within a hospital or skilled nursing setting.
  2. Residential patients.

These patients could receive in-home hospice, but they either don’t have caregivers available or their home environment isn’t conducive to receiving care. For instance, patients may have young children present within their homes or their care needs might be difficult to manage.

Joni Watson, director of business development, noted inpatient and residential hospice care patients benefit greatly from the multitude of resources available at a provider like the T. Boone Pickens Hospice and Palliative Care Center. Hospice centers tend to have various amenities that might not be readily available within a home, hospital or skilled nursing setting.

“We like to think of The Pickens Center not as a hospice provider, but as a patient and family care center,” explained Watson. “We have an experienced staff that’s fully equipped with the necessary knowledge, skills and equipment. Every aspect of our center is also designed to accommodate the entire family’s needs beyond just the clinical.”
Some patient-and-family-centered amenities at The Pickens Center include:

  • Multiple dining areas, including family dining and a café
  • Children’s playroom
  • Teen area with Wi-Fi, books, TV and more
  • Exercise room
  • Lounges, sunrooms and open areas for families to meet in small groups
  • Laundry facilities
  • Large, private suites to accommodate both patients and their families
  • Spiritual care center open to all faiths

While hospice centers offer compelling benefits, Watson acknowledged that many patients and their families would ideally like to receive care within the comforts of their own homes. However, she noted the primary advantage of inpatient hospice care like that offered at The Pickens Center is the capacity to overcome any barriers to care that might arise.

“Oftentimes, families come to the conclusion that hospice care is difficult or challenging to administer at home,” added Watson. “Thankfully, The Pickens Center is a very comfortable place for our patients and their loved ones during a very difficult time. We try our best to offer an environment that can truly become a home away from home.”

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The Difference Between Nonprofit and For-Profit Hospice

Like many other fields, the American hospice care landscape is comprised of both for-profit and nonprofit organizations. While both categories of providers specialize in end-of-life care, the two differ in terms of their financial structures and goals. According to John Mezo, executive director at Faith Presbyterian Hospice, the main difference between for-profit and nonprofit hospice care providers lies in how they allocate their money and resources.

“When you’re a for-profit hospice care provider, your goal is to not only serve patients, but to also please your shareholders through financial returns,” explained Mezo. “As a nonprofit, all our surplus funds and resources are invested back into Faith Presbyterian. Therefore, we’re able to consistently improve and expand the amenities and services we provide.”

Mezo’s assessment has some strong evidence to back it up. According to a national hospice survey conducted by Yale University and the Icahn School of Medicine at Mount Sinai, nonprofit and for-profit hospices differ in their contributions to the community, and to patients and their families. For-profit hospice centers are less likely to provide community benefits by serving as training sites, conducting research and providing charity care.

Other studies have found that for-profit hospice centers provide a narrower range of services to patients and families, offer less comprehensive bereavement services to families, have less professionalized staff, and have lower staff-to-patient ratios.

“For-profit hospice organizations certainly have the same goals we do in terms of making a difference in the lives of patients and their families,” noted Mezo. “They just happen to lack the same financial freedom to invest all their extra dollars back into their organizations.”

This freedom has enabled Faith Presbyterian Hospice to pursue innovative programs beyond the scope of the typical hospice care provider. These include:

  • Faithful Paws – Provides the soothing presence of animals to provide comfort and help patients cope with illness.
  • Faithful Presence – Faith Presbyterian records the memories, appreciations, and stories of loved ones and friends to help ensure nothing is left unsaid. The recordings are provided to patients and to all participating family members.
  • Child and Family Bereavement – Incorporates play therapy and music to support grieving children at their time of greatest need. Child life specialists, social workers and bereavement coordinators are part of a team that offers family support following the loss of a loved one when children are involved.
  • Camp Faith – Offered in the months of August and December, this day camp allows children, grandchildren, and their surviving parents and grandparents to express their grief in a safe, secure, creative environment, and to develop creative ways to heal after the loss of a loved one.

“The Faith difference is simply going the extra mile to provide the best personalized, holistic care to those we serve,” explained Mezo. “Our nonprofit status is key in ensuring we do just that.”

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Why Do Patients Leave Hospice Care?

According to Dr. Alexander Peralta, chief medical director at Faith Presbyterian Hospice and the T. Boone Pickens Hospice and Palliative Care Center, two of the most common reasons hospice patients are discharged are:

  • Disease stabilization or remission
  • Pursuit of holistic and integrated therapies

Disease Stabilization or Remission

In some instances, patients with a terminal diagnosis don’t receive the proper medications and dosages for their ailments prior to receiving hospice care. Dr. Peralta explained that this can happen for a variety of reasons, including improper self-administration of medication or financial hardship.

“These issues are solved when patients receive hospice care because we provide all the medications that are needed for their terminal diagnosis,” added Dr. Peralta. “For the first time, some patients are getting all their medications at the right time, at the right frequency and at the right dosage. What happens then is they get better.”

Dr. Peralta pointed out that in other instances, patients with a terminal diagnosis receive treatment that is so severe it worsens their illness. This is common in patients suffering from chronic cancer.

“These patients come to hospice and get palliative measures and comfort care, and suddenly they get better,” explained Dr. Peralta. “This doesn’t mean they’re cured, but they regain functionality. They no longer need acute, intensive and aggressive palliative treatments to address their symptoms.”

According to the U.S. Medicare policy, patients are discharged from hospice care if their condition improves and their illness is no longer deemed terminal.

Pursuit of Holistic and Integrated Therapies

A core component of hospice is a patient’s freedom to personalize their care. Patients and their families determine when care will begin and end, where it will be administered, and who will be involved in the caring process. As a hospice benefit, the Centers for Medicare & Medicaid Services (CMS) ensure that patients and their representatives can choose to discontinue hospice care at any time.

“We always work to understand the patient and their family’s perspective and needs,” said Dr. Peralta. “Our holistic approach also involves being open to them seeking holistic care and therapies. We’re supportive of integrated therapies that’ll boost their physical, psychological, social and spiritual well-being.”

Some holistic care and therapy options offered at Faith Presbyterian Hospice include:

  • Pet therapy
  • Licensed, certified music therapy
  • Certified massage therapy

If eligible, patients who discontinue hospice care may pursue it again should they deem it beneficial.

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The Hospice Experience

A Holistic Approach to Care

Hospice care is designed to ensure that a patient experiences a peaceful, dignified, pain-free journey in a setting of their choice during their final months or weeks of life. This is achieved by addressing the four major domains of suffering for those with terminal, acute or chronic diseases, namely:

  • Physical – the bodily pain caused by illness
  • Psychological – the depression, anxiety and/or agitation that stem from illness
  • Social – the changes that occur within relationships during progressive illness
  • Spiritual – the questions that arise regarding the meaning of life, the patient’s legacy and the “why” of dying

“The idea behind hospice is to promote comfort, growth and development at the end of life,” explained Dr. Alexander Peralta, chief medical director at Faith Presbyterian Hospice and the T. Boone Pickens Hospice and Palliative Care Center. “Nobody had created a clear template for doing that in the medical environment prior to the establishment of hospice care.”
The term “hospice” has its roots in hospitality, with the original meaning used to describe European inns where travelers would receive meals and accommodations before resuming their journeys. That basic concept of hospitality was carried over when “hospice” was modified to encompass end-of-life care in the late 60s and 70s.
“Hospice is a gift to humanity because it involves intensive human caring at a difficult time in the illness trajectory,” added Dr. Peralta. “Everyone eventually dies, and we all deserve to receive the best holistic care possible as we endure that final stretch of life. Hospice is vital because it caters to a shared human experience. It’s not just for a select few.”

The Hospice Team

To ensure effective physical, psychological, social and spiritual care in accordance with a patient’s and their family’s needs, hospice relies on an interdisciplinary team of both medical professionals and support personnel. A typical hospice team is comprised of a:

  • Registered nurse and licensed vocational nurse
  • Nurse
  • Physician
  • Certified nurse assistant
  • Medical social worker
  • Chaplain
  • Bereavement counselor
  • Volunteers

Dr. Peralta explained that each of these professionals plays a unique, crucial role in ensuring a patient’s and their family’s needs are catered to.
“Hospice differs from many other medical specialties that mainly focus on pain and symptom management,” said Dr. Peralta. “It’s not just a doctor that’s managing the care. We have a diverse team in place that goes well beyond traditional-based medicine, which helps optimize and personalize the care we provide.”

Palliative Care and How It Relates to Hospice

Palliative care is an approach to medicine that not only supports a patient’s medical needs, but encompasses every other aspect of their life. It aims to relieve suffering while taking into consideration the values, beliefs and culture of patients and their families. It also supports the family’s wishes throughout the illness and in the event of death. An example of palliative care is when cancer patients forego sole aggressive medicinal treatment, and instead combine both medicine and supplementary treatments such as psychotherapy to help cope with the symptoms, side-effects and emotional toll of illness.

Both palliative care and hospice provide comfort, but differ regarding when they’re administered to patients. Palliative care can begin at diagnosis and is administered along with curative treatment. Hospice care is a subset of palliative care that begins after an illness is deemed terminal and curative treatment is discontinued.
According to Dr. Peralta, hospice and palliative care give medical and support personnel sufficient avenues to provide information that patients and their families can use to make critical and ethical decisions regarding life-sustaining care.

“We have the unique opportunity to sit down with patients and their families and have difficult discussions,” said Dr. Peralta. “We work to understand what they’d like their care to look like from a physical standpoint and beyond. We also have the opportunity to explain the diagnosis and prognosis, as well as walk them through every step of the care process.”

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The Pickens Center Receives an Additional $2.8 Million

The Presbyterian Communities and Services Foundation has raised additional funding for the T. Boone Pickens Hospice and Palliative Care Center.  Four Dallas families have generously given gifts totaling $2.8 million. The Pickens Center is scheduled to open this spring and will be the first stand-alone hospice in the Dallas Metroplex. You can read about the donations, why the families chose to give to the Pickens Center and details about the hospice’s centers of excellence in this eHospice article.

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