Hospice & Palliative Care Treatments

Pediatric palliative and hospice care is a model of care that focuses on enhancing the quality of life for infants, children, adolescents and young adults living with a life-limiting illness and their families. The goals of care are similar to those for adults: preventing or alleviating suffering (both physical and psychological), maximizing function and minimizing distress. Unlike adults, however, children may receive both palliative and hospice care alongside therapies aimed at curing their disease. 

Typically, the pediatric palliative care team is made up of a physician who specializes in both pediatrics and palliative care, one or more nurses, a social worker, and a chaplain. The team may also include other support staff, such as an occupational, speech and/or physical therapist. Many hospitals also offer resource counselors who help the family sort through the logistical and financial challenges of caring for a child with a serious illness. 

Large hospitals and those that specialize in the care of children and adolescents may also have a child-life specialist on the pediatric palliative care team. These specially trained professionals are skilled at engaging children in age-appropriate activities that can help them understand and cope with treatments and reduce their anxiety, pain and distress. A child-life therapist may also offer the child developmentally appropriate ways to express difficult emotions through play therapy. 

Caring for the Family as a Whole

Although all care models encompass both the ill person and their family system, pediatric palliative care teams are particularly attuned to the needs of the child’s parents, grandparents, siblings and extended family. The stressors faced by the parents of a seriously ill child are enormous. Not only must they deal with the reality of their child’s suffering and possible death,  they often feel responsible for their child’s illness and are plagued by feelings of guilt and shame. Many families also face financial hardship due to mounting medical bills and loss of income if one parent has to leave the workforce to care for the sick child. 

At the same time, grandparents may be called upon to care for a family’s other children, whether they have the resources to do so or not. Meanwhile, siblings often suffer quietly in the background, struggling with feelings of guilt, shame, fear and abandonment. These children often suffer life-long consequences, such as chronic depression, difficult interpersonal relationships, anxiety and post-traumatic stress. 

The overarching fear of losing the child forever colors all of the family’s actions and interactions when a child is seriously ill. The pediatric palliative care team works with both the individual family members and the family as a whole to minimize distress and give them the support and guidance they need. In some cases, parents and siblings may be referred to a psychotherapist or play therapist for individual counseling. They may also be invited to join support groups, which exist for both parents and siblings as well as the patients themselves. As the child becomes sicker and death appears imminent, spiritual counselors may also help the family engage in meaning-making activities and end-of-life rituals that offer comfort as the child’s life comes to an end. Pediatric hospice also offers ongoing bereavement care. 

Sources

“Pediatric Concurrent Care”. National Alliance for Care at Home. https://allianceforcareathome.org/wp-content/uploads/Continuum_Briefing.pdf 

“Play Therapy in Medical Settings”.  Handbook of Play Therapy. https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119140467.ch24 

“Evaluation of quality of life of healthy siblings of children with chronic disease”. Turkish Archives of Pediatrics. https://pmc.ncbi.nlm.nih.gov/articles/PMC6408193/ 

“Bereavement Care”. CaringInfo. https://www.caringinfo.org/types-of-care/bereavement-care/ 

An end-of-life doula or death doula (also known as a death midwife or death coach), similarly to a birth doula, is a professional who offers emotional and physical support while guiding one through their transitional event. The end-of-life doula aids and comforts the dying person as well as their loved ones while offering education and guidance about the dying and grief processes. They can also play a valuable role in ensuring their patients’ needs and wishes are met, coordinating with medical providers and/or the hospice team as well as the patient’s family and other people of significance. 

Death doulas typically aren’t licensed to provide medical care, and though there aren’t national or state requirements or licenses to become a death doula, most undergo training or certification from various programs. When seeking an end-of-life doula, word of mouth, positive reviews and research can provide valuable insight.

Potential services of an end-of-life doula

Keeping in mind that every doula is as distinct as each dying person and their needs, the ways they serve can vary. However, typical duties can include: 

• Talking about death, dying and grief openly and honestly
• Overseeing care along with the hospice/palliative/medical team
• Discussing advance directives or end-of-life planning
• Arranging the look, feel, smell, etc, of the dying person’s environment
• Supporting the dying person’s religion or spirituality with end-of-life rituals or meditations
• Sitting vigil with the dying person during their last moments
• Guiding loved ones through their emotions and grief process
• Assisting with funeral or end-of-life arrangements

An end of life doula can be an invaluable asset in providing truly person-centered end-of-life care, especially if your family chooses to provide natural death care and/or a funeral in your home. To find an end-of-life doula in your area, use this search form provided by the International End-of-Life Doula Association. 

Sources

“What an End-of-Life Doula Can Do for You”. Cleveland Clinic. https://health.clevelandclinic.org/death-doula 

“What is a Doula?” INELDA. https://inelda.org/about-doulas/what-is-a-doula/

The adoption of the hospice care model in the 1960s and 70s was an enormous step forward for the healthcare community. Always dedicated to alleviating suffering, those who cared for dying persons now had a model that emphasized not only the patient’s physical needs but their emotional and spiritual well-being as well. More importantly, research demonstrated the value of this person-centered approach in multiple ways. As a result, healthcare providers and policymakers began to look at expanding this care model to any person who was seriously ill. This marked the beginning of the concept of a separate medical speciality known as palliative care. 

In 1990, the World Health Organization officially declared palliative care a distinct medical specialty separate from hospice care. Although the two share a primary goal — alleviating suffering  — palliative care also seeks to prevent or at least obviate the physical, emotional and spiritual distress associated with life-limiting illness by addressing patients’ and families’ needs early in the disease trajectory. It also differs from hospice in that a patient may pursue curative treatments such as chemotherapy or immunotherapy while receiving palliative care. 

At first the idea of palliative care was slow to catch on. Most healthcare providers failed to see the distinction between hospice and palliative care or understand the value of intervening early in the disease course before the patient or their caregivers experienced significant distress. But as medical technologies and pharmaceuticals emerged during the 20th and early 21st centuries that allowed people with life-limiting illnesses to live ever-longer lives, the need to address the needs of this growing population became clear. As a result, between 2000 and 2011, the number of U.S. hospitals offering palliative care programs grew by over 150%. Today, about 75% of hospitals with over 50 beds nationwide have a palliative care program in place. Further, many hospitals are beginning to extend their palliative care programs to include patients in assisted-living facilities, nursing homes and those living at home. 

With that being said, access to palliative care continues to be limited, largely due to the concentration of programs in large urban areas. As of 2019, only 17% of hospitals in the rural U.S. had a palliative care team. Access also varies widely by geographic region. According to the Center to Advance Palliative Care, less than a third of all hospitals in the south-central states of Arkansas, Mississippi and Alabama have a palliative care program, while 100% of hospitals in New Hampshire and Vermont have a palliative care team. Other states in the Northeast, notably Massachusetts and Rhode Island, offer palliative care in nearly 90% of all hospitals. Utah, Montana and Nevada also have robust participation, with nearly 100% of hospitals offering some level of palliative care. 

Sources

“America’s Readiness to Meet the Needs of People with Serious Illness”. Center to Advance Palliative Care. https://scorecard.capc.org/ 

Palliative care is available in a variety of settings, including at home. Although palliative care is frequently associated with settings such as nursing homes, clinics, and hospitals, it is becoming increasingly popular for patients to receive palliative care in the privacy and comfort of their own homes. It’s important to note, however, that not all healthcare providers who offer palliative care to hospitalized patients offer the service after discharge. 

Depending on the needs of the patient, care may be administered by an entire palliative care team or by one palliative care service provider. Visits from these medical providers may occur at a set cadence depending on individual needs and the condition that is being treated. Receiving palliative care at home does not limit access to other services.. Some of the common palliative care interventions used in home settings include: 

• Symptom management and tracking
• Specialized therapy 
• Medication, including pain management 
• Patient and family education 
• Medical evaluations 
• Skilled nursing 
• Spiritual guidance (usually from a chaplain) 
• Assistance with meals and daily activities  

Most palliative care services also include a nurse advice line that is accessible 24 hours a day, 7 days a week. This ensures that both the patient and their caregiver receive ongoing support and have access to appropriate guidance when it is most needed. For example, if a caregiver is uncertain of whether a new symptom or medical concern requires emergency assistance, contacting the advice line and speaking with a nurse can provide a quick confirmation and potential next steps. 

Those who are interested in potentially receiving palliative care at home are encouraged to consult with their healthcare provider or current palliative care team. These medical professionals will assess patient needs to determine whether receiving home-based palliative care is appropriate. Additional consultation with a health insurance provider is recommended to ensure that any care approved by the team is covered as the patient transitions from the hospital or clinic to a household setting. 

Sources

“What Are Palliative Care and Hospice Care?” National Institute on Aging. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care

“What Is Palliative Home Care? Understanding What to Expect”. A Place for Mom. https://www.aplaceformom.com/caregiver-resources/articles/palliative-care#palliative-care-at-home 

“Palliative care can help you stay safely at home”. Get Palliative Care. https://getpalliativecare.org/palliative-care-can-help-stay-safely-home-2/ 

According to established Medicare rules, the Medicare hospice benefit does not cover care that is intended to cure a person’s illness or treat chronic conditions that might shorten a person’s life. This means that if a patient receives benefits for hospice care, curative treatment will not be covered. While this currently remains the case, federal lawmakers recently piloted a program called the Medicare Care Choices Model that examined whether expanding coverage to allow patients to receive both hospice and curative treatments would be of benefit.

In 2016, the Affordable Care Act authorized a limited test of this hospice model that allowed some terminally ill patients to receive both hospice and curative care. The program was created to help policymakers learn whether expanding treatment options would encourage greater participation in hospice, which is still vastly underutilized in the United States. The model was only made available to patients with advanced cancers, chronic obstructive pulmonary disease, heart disease and HIV/AIDS who had been certified by a physician as having six months or fewer to live. 

The patient must also have met the following conditions to participate in MCCM:

• Has been enrolled in Medicare Part A and B for at least 12 months
• Has not elected the Medicare hospice benefit within the previous 30 days
• Resides in a home (not an assisted living facility or nursing home)
• Has had at least one hospital “encounter” (admission, ED visit or observation stay) in the previous 12 months
• Has had a minimum of three office visits with any Medicare approved provider within the previous 12 months 

Patients enrolled in the program continued to receive medical care or curative treatment for their underlying diagnosis from the provider of their choice, while also receiving supportive services from hospice providers in their area. The hospice received a flat monthly fee for the services it provided. 

The MCCM test was implemented in two phases: The first began in 2016, and the second began in 2018. The program concluded in 2020, and was evaluated based on several factors, including cost-savings to Medicare, outcome improvement (fewer Emergency Room visits and hospitalizations) and patient satisfaction scores. 

The results of the MCCM test were deemed equivocal, and the Center for Medicare and Medicaid Services has not announced any decision about expanding the program as of October 2022. This means that terminally ill patients must continue to decide whether hospice or curative treatment is the right option for them.

Sources

“Hospice care”. Medicare. https://www.medicare.gov/coverage/hospice-care 

“Hospice Underutilization in the U.S.: The Misalignment of Regulatory Policy and Clinical Reality”. Journal of Pain and Symptom Management. https://pubmed.ncbi.nlm.nih.gov/30142388/ 

“Findings at a Glance: Synthesis of Evaluation Results across 21 Medicare Models 2012-2020”. Centers for Medicare and Medicaid Services. https://www.cms.gov/priorities/innovation/data-and-reports/2022/wp-eval-synthesis-21models-aag 

“Medicare Care Choices Model”. Centers for Medicare and Medicaid Services. https://www.cms.gov/priorities/innovation/innovation-models/medicare-care-choices 

The term “hospice” dates back to medieval times, when it referred to a place of shelter for weary travelers. It wasn’t until the mid-20th century that the word came to be associated with specialized care for the dying. That is when Dame Cicely Saunders, a British physician, nurse and social worker, began working with terminally ill patients in an effort to bring dignity and comfort to the end of life. At that time, most people in the terminal phase of an illness were simply sent home to die, usually in terrible pain and distress. Morphine was considered dangerous and addictive, so suffering patients rarely received any pain medication, even at the end of life. 

In 1967, Saunders founded the first modern hospice, St. Christopher’s Hospice, in the London suburb of Sydenham. In addition to being the first inpatient facility in London to embrace the philosophy of compassionate end-of-life care, St. Christopher’s pioneered the use of morphine to control dying patients’ pain. But the care provided focused on more than just controlling symptoms. In keeping with Saunders’ philosophy, St. Christopher’s aimed to meet the practical, emotional, social and spiritual needs of the patient and their family, including bereavement care. By 1969, the hospice had begun delivering care to patients in their homes. 

Even before founding St. Christopher’s, however, Saunders was working to spread the word about the need to provide more compassionate care to people at the end of life. In 1963, she traveled to the United States, and while there, gave a lecture at Yale. As she spoke, she showed the doctors, nurses and social workers in attendance photos of dying patients before and after they began receiving appropriate symptom control. This so impressed Florence Wald, then Dean of the Yale School of Nursing, that she invited Saunders to become a visiting faculty member for the spring term. Wald later went to England to study under Saunders at St. Christopher’s Hospice, and in 1974 she joined two physicians and a chaplain to found Connecticut Hospice in Branford, Connecticut, the first modern hospice in the United States. 

Over the next decade, the federal government and private foundations funded a great deal of research on the benefits of hospice care. For example, in 1978, the National Cancer Institute sponsored three hospice demonstration projects in order to evaluate the type of care provided and associated costs. And in 1981, the W.K. Kellogg Foundation awarded a grant to the Joint Commission on Accreditation of Hospitals to develop national standards for hospice care. 

Then, in 1982, Congress enacted the Tax Equity and Fiscal Responsibility Act (TEFRA), which made hospice a Medicare-covered benefit. Their rationale was simple: Years of research demonstrated that hospice would provide substantial cost savings over inpatient hospital care. The initial legislation limited the benefit period to 210 days based on study data that showed that more than 95% of the patients were on hospice for fewer than 210 days. The benefit period was later revised and eventually removed entirely. Instead, Medicare now requires that patients receiving hospice care are recertified as being terminally ill by a doctor after 6 six months and every 90 days thereafter. 

TEFRA also established what is still a hallmark of hospice care — the interdisciplinary care team. Hospice providers were, and to this day still are, required to coordinate patient care with input from a doctor, a nurse, a social worker, a spiritual counselor of some sort and the patient and their family. The legislation also required the involvement of volunteers and the provision of bereavement care to the family after the patient’s death.

Sources

“Dame Cicely Saunders”. St. Christopher’s. https://www.stchristophers.org.uk/about/damecicelysaunders/ 

“Our History”. St. Christopher’s. https://www.stchristophers.org.uk/about/history/ 

The Connecticut Hospice. https://www.hospice.com/ 
“Hospice and Medicare: 20 years of growth”. Relias Media. https://www.reliasmedia.com/articles/79895-hospice-and-medicare-20-years-of-growth

Hospice and palliative care have very similar treatment goals. But unlike hospice care, which is limited to people whose doctors estimate they have six months or fewer to live, palliative care doesn’t depend on a prognosis, and patients receiving palliative care can pursue curative therapies at the same time. 

Health care providers once thought of hospice care and palliative care as one and the same. That is, they viewed the care provided to a person with a life-limiting illness as either curative or palliative (aimed at treating symptoms of an illness but not the underlying disease). But over the past decade, palliative care has evolved into a specialty that treats anyone who is seriously ill, regardless of where in their illness trajectory they may be. This includes but isn’t limited to people living with these conditions:

• Cancer
• Heart disease
• Chronic obstructive pulmonary disease
• Chronic kidney disease
• Parkinson’s disease
• Alzheimer’s disease and other dementias 

With that being said, the goals of both hospice and palliative care are the same: relief of symptoms, easing of emotional and spiritual suffering, and family support. Further, both care models employ the same kind of multidisciplinary teams — a group of health care professionals that typically includes a doctor, a registered nurse, a social worker, a mental health professional, a member of the clergy and volunteers. But because palliative care may extend over many months or even years, the team may also include occupational and physical therapists and financial counselors as well. These professionals work with patients to help them maintain or regain physical function and find resources to pay for medical care, household expenses and the like. 

As a person’s illness progresses towards the terminal phase, the palliative care team can also be instrumental in helping the patient transition from curative to comfort care. This may be a gradual process that involves multiple discussions aimed at identifying interventions that are no longer improving the patient’s quality of life and readjusting the goals of care. At some point, this usually involves transitioning to hospice care. 

Sources 

“What is palliative care?”. MedlinePlus. https://medlineplus.gov/ency/patientinstructions/000536.htm 

Unfortunately, in most situations, hospice staff do not provide all or even most of the care patients need. Instead, family members or hired caregivers are responsible for the lion’s share of physical care, even for patients who are very sick with many complex needs. Hospice provides the necessary equipment, such as a hospital bed, an oxygen concentrator and medicines for pain and anxiety. And a registered nurse visits the patient during the first 24 hours to perform an initial assessment and instruct the family on how to provide needed care. But beyond that, nurses typically act in an advisory role, giving advice and answering questions over the telephone. Nurse aides and volunteers may visit more regularly, but according to a recent report from Kaiser Health News, the average amount of time spent with the patient by hospice caregivers is about 30 minutes per day. 

Most patients and their care partners are totally unprepared for this reality or the physical demands of caring for a dying loved one in the home. Although they may have some experience caring for their loved one’s basic medical needs, such as ensuring that they take medications on time, many people are overwhelmed with the more complex care required as their loved one becomes increasingly ill. They may, for example, need to do the following:

• Adjust pain medications, sometimes many times each day
• Lift and reposition the patient for comfort, toileting and skin care
• Change dressings and provide wound care
• Change diapers 
• Give medicines and fluids through a feeding tube
• Administer oxygen

For family caregivers who are also struggling with the demands of everyday life and the reality of losing someone they love, providing this level of care can be enormously burdensome. Many people eventually turn to paid caregivers, although few can afford to hire someone to provide care 24 hours a day.

Sources

“Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families”. KFF Health News. https://kffhealthnews.org/news/home-hospice-care-unexpectedly-burdens-family-caregivers/