Preliminary Research Requirement on Innovations

in regards with Palliative and Hospice Care,

Current Trends and Issues Regarding Palliative,
and Hospice Care, and Diseases in which Palliative
and Hospice Care is Applicable and how it is applied

Elective – 1

Submitted to: Joselito Sarampote Jr. RN MANc

03/20/2019

Made by: Reginaldo, Belle Roxanne L., BSN-III

 A. Innovations in regards with Palliative and Hospice Care

● Kaiser Permanente’s In-Home Palliative Care Program

Kaiser Permanente (KP) established the TriCentral Palliative Care Program in
1998 to achieve balance for seriously ill patients facing the end of life who were
caught between “the extremes of too little care and too much.” KP began the program
after discovering that patients were underusing their existing hospice program. The
TriCentral Palliative Care program is an outpatient service, housed in the KP home
health department and modeled after the KP hospice program with three key
modifications designed to encourage timely referrals to the program:

Physicians are asked to refer a patient if they “would not be surprised if this
patient died in the next year.” Palliative care patients with a prognosis of 12 months
or less to live are accepted into the program. Improved pain control and symptom
management are emphasized, but patients do not need to forgo curative care as they
do in hospice programs. Patients are assigned a palliative care physician who
coordinates care from a variety of health care providers, preventing fragmentation.
The program has five core components that are geared toward enhanced quality of
care and patient quality of life.

These core components are: An interdisciplinary team approach, focused on

patient and family, with care provided by a core team consisting of a physician, nurse,
and social worker, all with expertise in pain control, other symptom management, and
psychosocial intervention, Home visits by all team members, including physicians, to
provide medical care, support, and education as needed by patients and their
caregivers. Ongoing care management to fill gaps in care and ensure that the
patient’s medical, social, and spiritual needs are being met, Telephone support via a
toll-free number and after-hours home visits available 24 hours a day, 7 days a week
as needed by the patient, Advanced-care planning that empowers patients and their
families to make informed decisions and choices about end-of-life care
● Sutter Health AIM PROGRAM
Sutter Health in northern California, in collaboration with its home care and
hospice affiliate, Sutter Care at Home, initiated a home health–based program,
Advanced Illness Management (AIM), in 2000 in response to the growing population
of patients with advanced illness who needed enhanced care planning and symptom
management. This program served patients who met the Medicare eligibility
criteria for home health, had a prognosis of 1 year or less, and were continuing to
seek treatment or cure for their illness. These patients frequently lacked
awareness of their health status, particularly as it related to choices and decisions
connected to the progression and management of their conditions.

They also were frequently receiving uncoordinated care through various

health channels, resulting in substandard symptom management. As a result,
patients tended to experience more acute episodes that required frequent use of
“unwanted and inappropriate care at the end of life, and they, their families, and
their providers were dissatisfied.” As the AIM program matured, it incorporated a
broader care management model, including principles of patient/caregiver
engagement and goal setting, self-management techniques, ongoing advanced care
planning, symptom management, and other evidence-based practices related to care
transitions and care management. The program connects with the patient’s network
of care providers and coordinates the exchange of real time information about the
current status of care plans and medication, as well as the patient’s defined goals.

This more comprehensive model of care for persons with advanced illness
has achieved improved adherence to patient wishes and goals, reductions in
unnecessary hospital and ED utilization, and higher patient/caregiver and provider
satisfaction than usual care. Today, AIM is not primarily a palliative care program.
Rather, it provides a comprehensive approach to care management that moves the
focus of care for advanced illness out of the hospital and into the home/community
setting. AIM achieves this through integrating the patient’s “health system.” This
integration occurs through formation of an interdisciplinary team comprised of the
home care team, representative clinicians connected to the hospital, and providers
of care for the patient. This expanded team, then, becomes the AIM care
management team that is trained on the principles of AIM and its interventions.
 With this enhanced level of care coordination and unified focus on
supporting the patient’s personal health goals, the AIM program serves as a
“health system integrator” for the vulnerable and costly population of people with
advanced chronic illness. Inpatient palliative care is a separate and distinct
systemwide priority at Sutter Health and, because of this, AIM collaborates
closely with the inpatient palliative care teams to ensure that patients experience
a seamless transition from hospital to home. There, AIM staff work with patients
and families over time to clarify and document their personal values and goals, then
use these to develop and drive the care plan. Armed with clearer appreciation of
the natural progression of illness, both clinically and practically, coupled with
improved understanding of available options for care, most choose to stay in the
safety and comfort of their homes and out of the hospital. These avoided
hospitalizations are the primary source of AIM’s considerable cost savings.

Patients eligible for AIM are those with clinical, functional, or nutritional
decline; with multiple hospitalizations, ED visits, or both within the past 12 months;
and who are clinically eligible for hospice but have chosen to continue treatment or
have not otherwise made the decision to use a hospice model of care. Once the
patient is enrolled, the AIM team works with the patient, the family, and the
physician on a preference-driven plan of care. That plan is shared with all providers
supporting the patient and is regularly updated to reflect changes in the patient’s
evolving choices as illness advances.

This tracking of goals and preferences over time as illness progresses has
been a critical factor in improving outcomes, especially those related to adherence
or honoring a patient’s personal goals. The AIM program started as a symptom
management and care planning intervention for Medicare eligible home health
patients. The program has evolved over time into a pivotal fulcrum by which to
engage or create an interdisciplinary focus and skill set across sites and providers
of care in an effort to improve the overall outcomes for patients with advancing
illness. In 2009, the AIM program began geographically expanding its home health–
based AIM teams across 12 counties surrounding the San Francisco Bay area and
the greater Sacramento region in northern California.
 The program now coordinates care with more than 17 hospitals and all of the
large Sutter-affiliated medical groups, and it serves approximately 800 patients
per day. The AIM program has yielded significant results in terms of both quality
of care and cost savings. Preliminary data on more than 300 AIM patients surveyed
from November 2009 through September 2010 showed significant reductions in
unnecessary hospitalizations and inpatient direct care costs. Survey data also
showed significant improvements in patient, family, and physician satisfaction when
latestage patients were served through AIM rather than through home care by
itself.

The Sutter Health AIM program recently received a Health Care Innovation
Award from the Center for Medicare & Medicaid Innovation (CMMI) because of
the program’s ability to “improve care and patient quality of life, increase
physician, caregiver, and patient satisfaction, and reduce Medicare costs
associated with avoidable hospital stays, ED visits, and days spent in intensive care
units and skilled nursing facilities.”The $13 million CMMI grant will help expand
AIM to the entire Sutter Health system. It is estimated that the program will
save $29,388,894 over 3 years.
B. Current Trends and Issues Regarding Palliative, and Hospice Care

● Palliative care: Issues and challenges

More than 50 million people die throughout the world each year. The majority
– four fifths – of these deaths are in developing countries. HIV has increased the
number of deaths, with 3 million people dying in 2000, 2.4 million in sub-Saharan
Africa. Even where advanced therapies are available, length of life may be reduced
for those with HIV. In addition, advanced HIV illness is associated with severe pain.
People living with HIV in developing countries can therefore expect a shorter life
span, and their death is likely to be unnecessarily painful and undignified. Care for
the dying is not new, and different cultures have different approaches to helping
people at the end of their lives.

Palliative care is based on a model developed in response to the needs of

cancer patients by the hospice movement in the UK. It aims to make death a pain-
free process which includes support, comfort and relief of symptoms, making it
possible for people to die with dignity. For people with HIV, palliative care is an
essential part of treatment, not only as death approaches but also through the
treatment of potentially fatal symptoms of opportunistic infections. Such
treatment, while not curative, nevertheless prolongs life for considerable periods of
time and restores quality of life. The HIV epidemic has led to increased efforts to
provide care and support for people in their homes. While this has been a great step
towards the care that people need, many home care projects are unable to provide
the pain relief and treatment of symptoms that are needed to prolong life and ease
dying and death. Huge investment is needed to ensure that when advanced treatment
is no longer effective, or when it is inaccessible for any reason, people can have
access to symptomatic treatment and pain relief. The obstacles are political,
financial and the lack of understanding and training in the palliative care approach.
As with other models of health care, HIV brings its own particular challenges to the
concept and implementation of palliative care.
2. What is Palliative Care?
The aim of palliative care is to provide the best possible quality of life both
for people approaching the end of life and for their families and carers. It is a
holistic approach to care and support, and takes into account emotional, psychological
and spiritual needs as well as physical needs. Pain control is central to the concept
of palliative care. Freedom from pain allows people to come to terms with their
approaching death and enables them to make arrangements for the future of others
who depend on them, as well as to live as fully as possible for as long as possible.
WHO defines palliative care as an approach that: Affirms life and regards
death as a normal process, does not hasten or postpone death, provides relief from
pain and other symptoms, offers a support system to help patients live as actively
as possible right up to their death, integrates psychological and spiritual care,
provides a wider support to help the family cope during the patient’s illness and their
own bereavement after death. Support for caregivers is an essential part of
palliative care, whether they be family members or professional carers. For
professional carers, an integral part of providing palliative care is to work with
families and friends to ensure effective communication. Pain control is central to
palliative care, and presents challenges in itself.

The analgesia ladder, as developed by WHO, includes three steps: Step 1:

Aspirin or paracetamol. Step 2: Codeine or dihydrocodeine, with or without non-
steroidal or anti inflammatory drugs such as ibuprofen or indomethacin. Step 3:
Morphine, with or without co-analgesia, and with or without steroid antiinflammatory
drugs. Other strong opioid analgesics include pethidin and fentanyl. Effective
palliative care includes access to these drugs, some of which are controlled through
restrictive legislation, and access to authorised staff competent in using them.
Training, policy change and change in attitudes towards the use of such drugs is an
essential part of developing access to palliative care. Cannabis has also been found
to be a helpful in symptom control for people with HIV, and some people living with
HIV/AIDS (PLWHA) have argued for it to be made more easily available. It is,
however, very strictly controlled in most settings. 3. Present models There are
existing models of palliative care approaches in developing countries. Some of these
were initially developed to respond to the needs of people with cancer and have
expanded to include people with HIV, and others which have developed palliative care
processes as part of their response to the HIV epidemic.
 Both face their own particular challenges and there are lessons to be learnt
from each – both for each other and for meeting the challenges of increasing the
scale of access to such treatment. In Africa, the Hospice movement has developed
and is expanding a few countries, including South Africa, Uganda and Zimbabwe. The
principles of the Hospice movement, established initially in the UK, were developed
in these projects to treat cancer patients, and are now working also with people with
HIV. This includes home care, treatment to relieve pain and psychological and
spiritual support. Some of these, such as Hospice Uganda and Hospice South Africa
(HASA) are able to provide training in palliative care to help increase the local
capacity in implement palliative care projects.

These Hospices, in common with other smaller hospice projects are caring for
people with HIV as well as those with cancer. This means understanding the issues
peculiar to HIV, including stigma and discrimination and the importance of
confidentiality, and the need to set up or link into other initiatives providing
voluntary testing and counselling. Other projects such as TASO, in Uganda, The
Mildmay Centre for AIDS Palliative care in Uganda, the Ministry of Health/NGO
Home Care Programme Government NGO in Cambodia, and the Ndola Diocese Home
Care programme in Zambia have been established in response to the HIV epidemic.
Links between the two models are necessary to ensure that optimum care is made
available to those who need it, and that the experiences from different angles are
shared. Good referral systems, especially where projects focus on different aspects
of palliative care, are also essential. 4. Public policy issues Palliative care, whether
for people with HIV or for others with chronic illness, is an essential part of any
health care system.
WHO has identified three foundation measures to scaling up the provision of
such care: 1. Development of a national policy. Palliative care is not recognized in
many government plans. For example, Uganda is the only country in subSaharan
Africa that has adopted WHO’s foundation measures for establishing a palliative
care service. While a handful of other countries in the region have some provision
for palliative care, this is provided outside the government health service. Advocacy
for provision of palliative care as part of the essential health service system by the
government will be a move towards ensuring some budget allocation for provision of
care for those with chronic illnesses. 2. Training for health workers and public
education. Understanding of what palliative is, and training to carry it out, is
necessary for policy makers, health professionals and families. For HIV, such
training needs to be linked to training on areas specific to HIV such as transmission
and control of transmission, issues of stigma and discrimination, and respect for
confidentiality. 3. Pain control. Pain is as important in HIV infection as it is in cancer.
Some studies have shown that pain is reported as a primary symptom by more than
half of people with HIV. In many countries, this will require training and awareness
raising among health professionals, and advocacy to change laws to make effective
pain relief available. The response to HIV has been led by NGOs, and often by small
community based NGOs with very limited resources.

As the health care services have been eroded by the impact of the HIV
epidemic, the response has been in many places to establish home care schemes.
These are often seriously under-resourced, and while there is no doubt that they
help to ease suffering (and if nothing else is available can provide accompaniment
and spiritual comfort), it is important that home care schemes are helped and
upgraded. Many have a great potential, through partnerships and working with
governments, to provide a platform from which proper provision of palliative care
can be started. But it is also important that home care, in the sense of providing
some minimal level of support, is not confused with provision of palliative care. As
with other aspects of HIV treatment, little research or experience is available on
palliative care for children with HIV. The principles of palliative care apply to both
children and adults – pain and symptom relief is as essential for children as it is for
adults. Palliative care is not an alternative to other models of health care. It is not
in competition with efforts to provide antiretroviral and other advanced therapies,
nor is it a poor relative to be implemented where such therapies are currently
inaccessible. It is an essential part of a comprehensive health care system, which is
missing in many developing countries, and must not be neglected in the efforts to
provide greater accessibility to more technical drugs and therapies.
C. Diseases in which palliative and hospice care is applicable and how it is applied?

● Complementary Medicine in Palliative Care and Cancer Symptom Management

Complementary and alternative medicine (CAM) use among cancer patients
varies according to geographical area, gender, and disease diagnosis. The
prevalence of CAM use among cancer patients in the United States has been
estimated to be between 7% and 54%. Most cancer patients use CAM with the
hope of boosting the immune system, relieving pain, and controlling side effects
related to disease or treatment. Only a minority of patients include CAM in the
treatment plan with curative intent. This review article focuses on practices
belonging to the CAM domains of mind-body medicine, CAM botanicals, manipulative
practices, and energy medicine, because they are widely used as complementary
approaches to palliative cancer care and cancer symptom management.

In the area of cancer symptom management, auricular acupuncture,

therapeutic touch, and hypnosis may help to manage cancer pain. Music therapy,
massage, and hypnosis may have an effect on anxiety, and both acupuncture and
massage may have a therapeutic role in cancer fatigue. Acupuncture and selected
botanicals may reduce chemotherapy-induced nausea and emesis, and hypnosis and
guided imagery may be beneficial in anticipatory nausea and vomiting.
Transcendental meditation and the mindfulness-based stress reduction can play a
role in the management of depressed mood and anxiety. Black cohosh and
phytoestrogen-rich foods may reduce vasomotor symptoms in postmenopausal
women. Most CAM approaches to the treatment of cancer are safe when used by a
CAM practitioner experienced in the treatment of cancer patients. The potential
for many commonly used botanical to interact with prescription drugs continues to
be a concern. Botanicals should be used with caution by cancer patients and only
under the guidance of an oncologist knowledgeable in their use.

● Irradiation related Heart Disease

An expectation for long-term survival has emerged among several groups of
cancer patients treated with therapeutic irradiation (eg, Hodgkin's disease, early
stage breast cancer). Therefore, the cardiovascular sequelae of thoracic
irradiation have recently come under scrutiny. Animal models have demonstrated
that cardiac irradiation can directly damage the myocardial microvasculature and
can indirectly damage the coronary macrovasculature when coupled with
cholesterol feeding.
 A clear association between thoracic radiotherapy and ischemic heart
disease was observed among older clinical studies using radiotherapeutic
techniques that are no longer optimal by today's standards. Such a relationship
could not be confirmed in modern studies in which treatment factors (such as dose
and volume of heart irradiated) were more carefully controlled.

● Pharmacological treatments for fatigue associated with palliative care

Fatigue in advanced disease such as cancer can be described as a subjective
feeling of tiredness, weakness, or lack of energy. It is debilitating, impacting daily
activity and quality of life, and continues to be a frequent challenge in palliative
care. Underlying mechanisms are still not understood, which complicates its
treatment. Although various pharmacological approaches have been examined, it
has not been possible to recommend a specific treatment for fatigue based on
scientific evidence. In this review, the researchers aimed to identify substances
that alleviate fatigue in advanced disease. We identified 22 studies for analysis,
reporting fatigue treatment in 1632 participants, examining neurological diseases
(multiple sclerosis (10), post-polio syndrome (1)), different types of cancer (6),
HIV (4), and end‐stage chronic lung disease (1). The identified therapeutic drugs
can be considered as drugs interacting with the central nervous system, hormones,
anti‐inflammatory substances, or food supplement. Unfortunately, most studies
included relatively small numbers of participants and research methodology was
often heterogenous, resulting in weak and inconclusive data. Thus, based on the
limited evidence, the authors still cannot recommend a specific drug for the
treatment of fatigue in palliative care, although amantadine in multiple sclerosis
and methylphenidate in cancer patients showed a superior effect. Interestingly,
the literature search did not reflect the common clinical practice of using
corticosteroids (drugs interacting with the immune system) for the treatment of
fatigue in palliative care, since there was a lack of such studies. However, future
research on psychostimulants and corticosteroids may be promising. In addition,
consensus is needed concerning the measurement of fatigue in advanced disease
(e.g. which scale should be used).
● Pain Management in Sickle Cell Disease: Palliative Care Begins at Birth?

People with sickle cell disease (SCD) are living longer, but their lives are
impacted even more by the unpredictable intermittent or constant pain that is
often poorly managed over a lifetime. To address this problem, an interdisciplinary
team approach is needed that brings the medical professionals together for
optimal compassionate care that is coordinated from the beginning of life and
throughout the patient’s lifespan. The hematologist, whenever possible, should take
the lead. Effective models that have been developed to address SCD pain, such as
the Day Hospital, The Recidivism Project and various Home Care models, need to be
integrated into an overarching plan on a continuum with an underpinning philosophy
that will sustain such a program.
While the focus of palliative care has been end of life, its philosophies fit
the chronic disease model and support an integrated team approach to the SCD
pain management dilemma. The patient-focused and family-oriented interventions
can be modeled to fit “any place, any time,” outpatient, inpatient or the home, with
homecare and other support systems. Such are the needs in SCD: appropriate,
timely and compassionate care to prevent or relieve suffering and to preserve
dignity, meaning, value and quality of life with improvement that is translational
from birth until the end of life.

Application of Diseases on Palliative and Hospice Care as defined by World Health

Organization (WHO)

Palliative care is an approach that improves the quality of life of patients

and their families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual. Palliative care: provides relief from pain and other
distressing symptoms; affirms life and regards dying as a normal process; intends
neither to hasten or postpone death; integrates the psychological and spiritual
aspects of patient care; offers a support system to help patients live as actively as
possible until death; offers a support system to help the family cope during the
patients illness and in their own bereavement;

uses a team approach to address the needs of patients and their families, including
bereavement counselling, if indicated; will enhance quality of life, and may also
positively influence the course of illness; is applicable early in the course of illness,
in conjunction with other therapies that are intended to prolong life, such as
chemotherapy or radiation therapy, and includes those investigations needed to
better understand and manage distressing clinical complications.

WHO Definition of Palliative Care for Children

Palliative care for children represents a special, albeit closely related field
to adult palliative care. WHO’s definition of palliative care appropriate for children
and their families is as follows; the principles apply to other pediatric chronic
disorders (WHO; 1998a): Palliative care for children is the active total care of the
child's body, mind and spirit, and also involves giving support to the family. It
begins when illness is diagnosed, and continues regardless of whether or not a child
receives treatment directed at the disease. Healthcare providers must evaluate
and alleviate a child's physical, psychological, and social distress. Effective
palliative care requires a broad multidisciplinary approach that includes the family
and makes use of available community resources; it can be successfully
implemented even if resources are limited. It can be provided in tertiary care
facilities, in community health centers and even in children's homes.
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