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Professional Development Resource -

promoting best practice

“Palliative care under observaton.”

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Education Booklet

CONTENTS

Palliative Care’s
Importance and best practice

1. Importance of Palliative Care

2. Palliative care in focus – Hospice
3. Benefits of Hospice
4. Deciding on a Hospice Care
5. Why choose Hospice Care
6. Where to look for Hospice care
7. Best practice

Important Information on Palliative Care

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World Health Organization mentioned the importance and need of palliative care some
of which are mentioned below.

● Why is palliative care important? - It improves the quality of life of patients, their
families and caregivers. It helps those who are challenged by physical, social, mental
or spiritual illnesses.
● Every year, approximately 40 million people require palliative care. 78% of these
people are from low & middle-income countries.
● However, the percentage of people who are receiving palliative care is only 14%
● One major reason for the lack of access to this care is extra restrictive regulations for
palliative medicines.
● Proper policies, resources and training related to palliative care are the need of the
time so that many can access palliative care.
● The need and demand for palliative care will only rise in the future due to the ageing
of people and the presence of communicable and non-communicable diseases.
● Palliative care can reduce hospital visits/admissions and the related cost and health
services.
● All health workers can play a part in providing palliative care.

According to McAteer & Wellberry (2013), palliative care includes identification,

assessment and treatment of illness that can be physical, mental or spiritual.

The care is applicable when a disease at a curable stage while also at chronic or sometimes
fatal. It is flexible because it can be applied with other therapies for the illness.

If curative treatment is no longer effective and if a disease is allowed to progress as it would

normally, the patients are likely to live six months or less. It is then that palliative care is
supposed to be administered. Palliative care, also known as supportive care, is a form of
treatment that focuses on relieving symptoms instead of curing an illness. The major goal of
palliative care such as hospice care is to increase of standard of life. Patient, families and
doctors need to work together regarding the commencement of hospice care.

Hospice

Hospice is a palliative care that is provided when other treatments are not effective or not
requested, usually because the patient has limited time left. It is intended to provide comfort
and support to the patients and families with relief from symptoms.

Palliative care has been hugely underused in dealing with patients with life threatening illnesses. In
2011, a large population of American patients who ended up dying did not receive a proper hospice
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care; it only lasted for a week or less than a month.

The focus of palliative care is quality of life and not life expectancy. It offers empathetic
treatment to people in the terminal stages of an incurable disease so that they can live the best they can
(Saunders, 1978). The hospice ideology recognizes death as the last stage of life and affirms life rather
than hastening or delaying it. Hospice care is cantered on the person, not the condition, and focuses on
treating symptoms so that the person's last days are spent with dignity and quality with loved ones. It also
focuses on the family, as the patient and family participate in the decision-making process.

Benefits of Hospice

 Hospice care is beneficial in symptom management and allows better quality of life
in comparison to normal care.
 As a result of hospice care, patients experience less depression, in control, less risks
of hospitalizations and thus, low cost due to better use of medical resources.
 Family and friends also experience higher satisfaction because of the better quality of
life of the patient.
 Survival rates seem to be better in cancer patients who obtain palliative care.
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Deciding on a Hospice Care

As a patient or family member, one should discuss all possible treatments in the first visit.
Hospice provider should know what it is that the patient wants. Hospices come in different
lengths; for instance, hospices won’t provide hospital care like blood transfusion, dialysis,
but a larger hospice care will let patient include hospice to the medical treatment. It is
important to get information from hospice provider how the care will be incorporated before
agreeing to receive it. Understanding the possible cure from the hospice care will help the
patients decide on it.

There are usually multiple hospice providers in a community due to which patients and
families have to choose the one that is appropriate for the patients as per their need. It is
required to get information of multiple hospice providers so that they can find the suitable
match in terms of hospice care. Even the patients should be able to take part in decision
making regarding the selection of hospice care and thus, the process to select hospice care
should be started while the patient is in good condition. Some of the important things to
consider while selecting hospice care are care quality, its access and availability, services
included along with cost.
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Why choose Hospice Care?

Hospice care helps in controlling pain and symptom. As a result, a patient is able to live a
more comfortable life with added control. Any hindrances to a quality life are controlled due
to which the patients are able to have a good time and take part in decision making.

Hospice care comes in both in-home service as well as hospital care. It is because
sometimes, patients might require extra care such as hospitalization, hospice centre or
extended care. Hospice team’s involvement will allow patients to make transition from home
to care centre and back. Depending upon the condition and readiness level of patients,
transitions are made with the help of hospice team.

Where to look for Hospice care?

The hospice care can be obtained from various agencies. It can be a private hospice
provider or an arrangement through hospitals or nursing centres and such healthcare
systems. Various healthcare workers are involved in hospice care for patients and families.
Doctors, counsellors, nurses, volunteers, etc. work to provide palliative (hospice) care so
that the patients’ problems are managed better. These helping personnel are often caring
and good communicators in working with the patients.
Hospice providers have trainings in situations related to death and they have the education
and supporting skills to deal with the demands of working in this area. Even the volunteers
play an important role by providing in person care or performing the office works in the
hospice centres.

According to the 9 studies on hospice service in home from the US, the UK and Israel, it was
found that the patients had advanced illnesses that were fatal (Candy et al., 2011) Thus,
hospice service had to provide supports that were mostly emotional at the home itself
(Christakis & Iwashyna, 2003); on the other hand, managing symptoms in patients was
another important task for hospice providers as per Brumley et al. (2007).

The hospice staffs were all nurses such as registered nurses and nurse specialist and the
hospice team also included physicians, counsellors, volunteers, etc. According to Gozalo &
Miller (2007), patients receiving hospice care were not expected to be hospitalized.
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Best Practice of Hospice

Realizing the positive impacts of hospice care should encourage hospital and patients to
utilize it at times of need.

For instance, hospice care can be more effective when palliative care is a part of standard
treatment.

A successful treatment model includes

a) Prognosis
b) Inclusion of a healthcare worker to check on advance actions
c) Scheduling of hospice care
d) Discussing prognosis, coping techniques and palliative care’s goals

It is the family physician that is well aware about the disease development in the patient and
thus, he/she can discuss appropriate future care for the chronic disease and the related
medical resources required.

On a similar note, use of tools like Palliative Prognostic Score, Model for end stage/renal disease that
can be applied to make predictions on mortality of adult patients. Hospitals need to place processes
whereby hospice is recommended after observing particular conditions in patients like long
hospitalization, loss in mental and physical capabilities. Palliative care should be a part of treatment
process which should be discussed more often because it has been heavily underutilized. Physicians
and patients can have different perspective to the situation while they both have same end goal which
is patient’s comfort at a chronic stage.
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References

 Amenta, M. (1996). Hospice Services: The Place of Hospice Care in Cancer

Treatment. In McCorkle, Ruth, et al., (Eds). Cancer Nursing: A Comprehensive
Textbook (pp. 1333-1422). Saunders.
 Brumley, R., Enguidanos, S., Jamison, P., Seitz, R., Morgenstern, N., & Saito, S.
(2007). Increased satisfaction with care and lower costs: results of a randomized
trial of in-home palliative care. J. Am. Geriatr Soc, 55(7), 993–1000.
 Candy, B., Holman, A., Leurent, B., Davis, S., & Jones, L. (2011). Hospice care
delivered at home, in nursing homes and in dedicated hospice facilities: A
systematic review of quantitative and qualitative evidence. International journal
of nursing studies, 48(1), 121-133.
 Christakis, N.A., Iwashyna, T.J., (2003). The health impact of health care on
families: a matched cohort study of hospice use by decedents and mortality
outcomes in surviving widowed spouses. Soc. Sci. Med, 57 (3), 465–475.
 Forman, W.B., Kitzes, J.A., Anderson, R.P., & Sheehan, D.K. (2003). Hospice
and Palliative Care: Concepts and Practice. Jones and Bartlett Publishers.
 Gozalo, P.L., & Miller, S.C. (2007). Hospice enrollment and evaluation of its
causal effect on hospitalization of dying nursing home patients. Health Serv. Res,
42(2), 587–610.
 McAteer, R. & Wellbery, C. (2013). Palliative care: benefits, barriers, and best
practices. American Family Physician, 88(12), 811-813A.
 Saunders, C. (1978). Hospice care. The American journal of medicine, 65(5), 726-
728.
 Stevenson, D. G., & Bramson, J. S. (2009). Hospice care in the nursing home
setting: a review of the literature. Journal of pain and symptom
management, 38(3), 440-451.
 Wright, A.A., & Katz, I.T. (2007). Letting Go of the Rope — Aggressive
Treatment, Hospice Care, and Open Access. N Engl J Med, 357(4), 324-327.