Hospice Nursing_Health Promotion Rehab Organizations

8/10/2019 Hospice Nursing_Health Promotion Rehab Organizations

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PART 2

1. Concerns for Health Promotion

This section of the paper is entitled Health promotion and disease prevention

and will discuss these aspects in relation to the hospice nursing vulnerability

group in Finland and America. It will reflect upon (1) the vulnerability groups

perspective of health promotion and disease prevention; (2) policies related to

health promotion and disease prevention and the vulnerability group in both

countries, and (3) the concerns regarding health promotion and disease

prevention for nurses working with the vulnerability group.

According to the World Health Organization, health promotion is the process

of enabling people to increase control over, and to improve, their health

(2014). However, the application of this definition to the Finnish and American

hospice nursing vulnerability group discussed in this paper is limited. This is

because, as the authors identified earlier in the paper, the service users in this

vulnerability group experience progressive end-stage illnesses which cannot

be halted, therefore no health promotion intervention could enable them to

gain control over or improve their health. For the purpose of disambiguation,

hospice nursing aims to meet the physical, mental, social, spiritual and

existential needs and support the relatives of patients with short life

expectancy due to progressive incurable disease (Ministry of Social Affairs

and Health, 2010).

Instead, health promotion for this vulnerability group focuses on the

attainment of physical, mental and social well-being (WHO, 1986).

Interestingly however, it is important to note that the concept of well-being too

must be adapted, in order to make it applicable to discussion about health

promotion and the hospice nursing vulnerability group. This is because

general consensus defines physical, mental and social well-being as the

presence of positive emotions and moods (e.g., contentment, happiness), the

absence of negative emotions (e.g., depression, anxiety), satisfaction with life,

fulfillment [!

,] positive functioning [!

and] physical well-being (e.g., feeling

very healthy and full of energy) (Centers for Disease Control and Prevention,


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2013), and it is not entirely realistic to expect these behaviors from hospice

patients and their families. Undoubtedly, some patients and families display

greater capacities for coping with terminal illness than others (Ashton, 2008).

It is accepted that impending death can affect physical well-being, e.g.

insomnia and changes in appetite; alter mental well-being by generating

negative emotions like anger, anxiety and sorrow and may impair normal

social functioning, e.g. withdrawing from others, feeling vulnerable and finding

it difficult to perform simple everyday tasks and (Ashton, 2008).

Taking this into account, it is reasonable to determine that achieving physical,

mental and social well-being for these patients centers on being able to

satisfy needs, and to change or cope (WHO, 1986) and that the hospice

nursing vulnerability groups perception of health promotion is that it should

focus upon attaining these goals.

The Canadian Ministry of Health and Long-Term Care defines disease

prevention as prevention strategies that reduce the risk of disease, identify

risk factors, or detect disease in its early, most treatable stages (2006). This

definition is applicable and particularly significant to the hospice nursing

vulnerability group because their physical fragility is a risk factor for the

acquisition of co-morbidities. For example, members of the client group with

terminal cancers who undergo radiotherapy or chemotherapy can experience

temporary or prolonged immunosuppression, which is a risk factor for

acquiring infection. Based upon this, it would be reasonable to suggest that

the vulnerability groups perspective of disease prevention would be a slight

adaptation of the Ministry of Health and Long-Term Cares, i.e. prevention

strategies which reduce the risk of further disease or co-morbidity.

Unlike in the United States where hospice nursing is a well-established

specialism, hospice nursing admittedly has some way to go to achieve this

status in Finland. It was described by Vainio (1990) as being in its infancy in

1990 and more recent data from the Economist Intelligence Unit (2010)

highlights that there is still progress to be made - Finland ranks 28th in the


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world for the quality of end-of-life care provision. This made it very challenging

to uncover governmental policies related to palliative care.

However, a Current Care Guideline for palliative (symptomatic) care of

(imminently) dying patients does stipulate that hospice nursing care should be

made available to all Finnish patients with terminal and end-stage diseases

at all health care levels (Current Care Guidelines, 2012). Health care

services in Finland are provided by municipalities, private health care

providers or employers - occupational health services (European Observatory

on Health Systems and Policies, 2012). But whilst there is evidence that the

Finnish hospice nursing vulnerability group is entitled to health promotion

services at municipal and private health care system level, there is no

evidence of health promotion procedures for this vulnerability group at an

occupational level. This is because occupational health care is only available

for Finnish residents in employment and the groups diseased state may

exclude them from this employment; suggesting that health promotion

services in Finland are only available to Finnish hospice nursing patients at all

health care levels, if they are employed. Nonetheless, when the vulnerability

groups access to health promotion services is assessed at a more basic level

i.e. primary, secondary and tertiary care level, the evidence that this Current

Care Guideline is being implemented is comprehensive.

In line with the Primary Health Care Act (1972) municipalities fund health

centers to provide primary health care for its residents (WHO, 2008) and since

the 1990s general practitioners have been responsible for health promotion -

encouraging physical, mental and social well-being by meeting patients

needs and supporting them to cope with their diagnoses of incurable illness -

at the Health Centre of Kangasala and the Health Centre of Virrat in Tampere

(Lammi et al., 2000). In these real life examples, health promotion is achieved

at primary care level through the alleviation of physical and psychosocial

symptoms (Lammi et al., 2000). Although the data about primary health care

provision for the hospice nursing vulnerability group in health centers was

published in 2000, its validity is re-affirmed by evidence that palliative care on

health center wards persists (Ministry of Social Affairs and Health, 2010).


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There is evidence of health promotion for the vulnerability group at secondary

care level too: information about the palliative unit at Tampere University

Hospital on the Pirkanmaa Hospital District website (2013) describes the

hospice nursing provided by the hospital as active care to reduce various

symptoms of the disease, although there is no emphasis placed on

psychosocial symptoms or support for families. In tertiary care services like

the Acorn Home hospice in Helsinki, nursing staff with specialized palliative

care knowledge satisfy patients needs and wishes and support patients and

their families to cope by alleviating the physical and psychosocial symptoms

of the illness; helping them to see death a normal end-point; providing grief

support and supporting families during the illness and after the death of their

loved one (Acorn Home, no date).

An area of concern for nurses caring for the hospice nursing vulnerability

group in Finland which relates to both disease prevention and health

promotion, is the lack of palliative care education for health professionals

working with this vulnerability group. Hospice nurses need to be

knowledgeable about the risk factors and determinants of health associated

with terminal disease if they are to prevent further disease from occurring. But

there is insufficient focus on palliative care education at both an

undergraduate and postgraduate level (Lynch et al., 2010), meaning that

nurses are not sufficiently knowledgeable about the needs that must be

addressed to achieve the physical, mental and social well-being of this client

group. This has implications for nurses working with pediatric palliative care

patients too since terminally ill children wish to stay at home as much as

possible (Ministry of Social Affairs and Health, 2010) and parents are only

willing to allow their child to be cared for at home if they feel sufficiently

supported by knowledgeable nursing staff (Laakarilehti, 2010).

A further area of concern for nurses caring for this client group related to

health promotion and disease prevention is linked to the central aspect of

palliative care pain relief. Opioid analgesics are commonly administered for

the alleviation of the pain symptoms associated with terminal illness (Current


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Care Guidelines, 2012) but can cause opioid induced constipation (British

National Formulary, 2014). Since the discomfort caused by constipation would

undermine the therapeutic effect of opioids and nursing interventions such as

suppositories, enemas or manual evacuation would be too distressing for this

physically vulnerable client group, it would be the role of the nurse to

administer a laxative alongside the opioid analgesia, thus preventing

constipation from occurring.

There are many areas of concern for health promotion regarding hospice

nursing in the United States. The process of dying is very emotional and

causes stress on the hospice patient and their family. It is important for the

nurse to be knowledgeable about the patients illness and the dying process.

The nurse is responsible for educating the patient and the family on this

crucial information. High costs of hospice care are another area of concern to

hospice patients and their families. The nurse needs to be sensitive to these

concerns and involve the patient and their family in all aspects of care

(Dobrina, Palese, & Tenze, 2014).

In caring for the patient through the emotional process of dying, the nurse

should understand that suffering is a multidimensional experience related to

physical symptoms, psychological distress, existential concerns, and social-

relational worries. The physical, psychological, social, and spiritual needs of

patients and their families must be considered by the nurse in hospice care.

These needs must be met in order to promote health within the hospice care

setting. The nurse is responsible for understanding the illness and dying

processes that the hospice patient experiences. The nurse should

communicate this knowledge to the patient and their family. The patient relies

on the nurse to educate and provide quality care for them based off

knowledge of the disease process (Dobrina, Palese, & Tenze, 2014).

The top nursing priority in hospice care is to establish a therapeutic

relationship with not only the patient, but the patients family as well,

facilitating an environment conducive to the best quality of care possible at the


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end-of-life. The nurse should always take a non-judgmental approach and

provide individualized care for each patient and family. It is important to

consistently assess and reevaluate the patient and familys wants and needs

throughout the dying process (Dobrina, Palese, & Tenze, 2014).

When forming a therapeutic relationship, the nurse must create a comfortable

environment for the patient and their family to discuss the illness and dying

process. This can be extremely emotional and the nurse should be prepared

to answer questions about what the family can expect throughout the end-of-

life process. Empathetic communication is a necessary asset in this process.

It is important for the nurse, patient, and family to feel comfortable in this

relationship, sharing values, fears, and meaning regarding life and death.

Compassionate nurses in hospice care can help families achieve optimal

comfort and function during the death of a loved one and can empower the

patient to have a sense of peace and maintain aspects of autonomy through

the progression of their illness (Dobrina, Palese, & Tenze, 2014). This

therapeutic relationship helps to promote the mental and emotional health of

the dying patient and their loved ones.

The hospice nurse has an important role in reframing the patient and familys

views of illness. The family must transition from hoping for a cure to a realistic

idea of prognosis and treatment focusing on palliative care and comfort

measures when caring for the patient. With this understanding, the family

gains the ability to cope with life-threatening illness while maintaining the

patients quality of life (Dobrina, Palese, & Tenze, 2014).

Finances are a major concern in hospice care. Hospice can be quite

expensive and may be a burden on the dying patient and their family. With the

current economic instability, there is an increasing number of people that dont

have insurance or available money for necessary end-of-life care. In the

United States, there are both governmental and non-governmental resources

to help aid the family in paying for hospice costs. With the hospice patient

population rising, the need for hospice care and support is at an all-time high


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(M. Blackwell, personal communication, September 24, 2014). It is important

for hospice patients tohave a means to pay for their palliative care.

2. Plan for Rehabilitation

The population receiving hospice care is different than most vulnerable

population groups. Rehabilitation usually determines making something better

and returning to former or normal function. The term rehabilitation is looked at

from a different perspective with hospice because the patients receiving care

are in the process of dying. The illnesses and conditions the patients are

suffering from are terminal and there is no returning to normal function. The

vulnerable population is mainly older adults, but can encompass any age

group with terminal, chronic illness. The nurses providing the care are working

towards comfort. The patient is near the end of life and may need emotional

or psychosocial support as well as physical care and comfort.

The process of palliative care takes the place of rehabilitation with hospice

care. In the United States, palliative care usually means comfort care for the

dying. Palliative care is defined as, interdisciplinary team-based care that is

focused on the relief of suffering for clients with serious illness. It attempts to

achieve the best possible quality of life not only for clients but also for their

families (Harkness & DeMarco, 2012). This care emphasizes acceptance of

illness while improving quality of life until death. The hospice movement

began in the United States in the 1970s. Since then, over 7 million patients

and families have received end-of-life care at home, as well as in nursing

homes or hospitals through hospice programs. Today, the number of patients

and families utilizing hospice or end-of-life care has increased substantially. In

2008, about 38.5% of the people who were dying received hospice services

(Harkness & DeMarco, 2012). In other words, a little less than half the dying

population received comfort care and had an increased quality of life up until

death.


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Hospice is usually classified as support to dying patients with an expected

prognosis of less than six months. Two different doctors must determine that

an ill patient has six months or less to live. The patient and family then must

agree to receive and provide comfort care as opposed to aggressive medical

interventions. However, it is hard to accurately predict how long a patient will

end up living, especially with a specific chronic disease. The hospice program

is supported by Medicare and the program was added by Congress in the

1980s. Even now, the program is still evolving. Many hospice programs are

extending palliative care well before the last six months of life for patients

dying from chronic illnesses. To provide all around care, hospice generally

focuses on the whole patient. By caring for the body, mind, and spirit, the

nurse assists the patient through the end of life (Harkness & DeMarco, 2012).

A multidisciplinary team is needed with hospice care. Typically, a nurse,

physician, therapist, pharmacist, social worker, pastoral counselor, and the

family all work together to provide care. The nurses main role is to act as a

patient advocate and manage pain while controlling symptoms (Harkness &

DeMarco, 2012). The nurse should also assess the patient and familys

coping mechanisms. The nurse can refer the family to other helpful outside

resources and make sure the patients wishes are closely followed. Even

though the patient is going through a difficult time and may have fears

associated with dying, the nurse experiences stress as well. It is difficult to

provide comfort care for a patient who is suffering. The nurse forms a working

relationship with the patient and may become emotional when that patient

eventually dies. That process over and over, or even simultaneously, is

draining mentally, emotionally and physically on a nurse. The multidisciplinary

team then comes together to provide adequate end-of-life care.

Throughout the world, hospice care ultimately has the same focus. Palliative

care, or comfort care, is provided in similar ways to relieve and guide the

dying patient. Hospice care is currently at different stages around the world.

The type of care develops and responds to various needs for each part of the

world. However, limited access to palliative care is one of the major issues.


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The World Health Organization estimates that about 24 million older adults

require palliative care at the end of life and about 66% of those adults are

over 60 years of age. With the growing need of hospice care, 42% of

countries still have no identified hospice and palliative care programs, and

80% of adults globally lack adequate access to medication for moderate to

severe pain. This explains that millions of older adults are dying in

unnecessary pain and distress, especially in the developing world. The

Worldwide Palliative Care Alliance (WPCA) urges for the improvement of

palliative care for older adults and to meet the needs of the worlds aging

population (World hospice, 2014). Integrating palliative care into community

and national health systems around the world can help start the trend for

better access to care during the dying process.

3. Government and Non-government Organizations

According to the National Hospice and Palliative Care Organization (NHPCO)

in the United States, in 2012, an estimated 1.5 to 1.6 million patients received

services from hospice. This estimate includes patients who died while

receiving hospice care, patients who received care in 2011 and who

continued to receive care in 2012, and patients who left hospice care alive in

2012 (Facts and figures, 2013). In 2012, hospice care cost the United States

government nearly 14 billion dollars. This amount is expected to increase

steadily with the baby boomer population, or individuals born between the

years 1946 and 1964, turning sixty-five and older. Although end-of-life care

can be a major financial burden on both the individual and the family,

Medicare hospice benefits cover costs for over 80% percent of patients (Facts

and figures, 2013).

The United States government defines Medicare as, a federal health

insurance program for people who are 65 or older, certain young people with

disabilities, and people with End-Stage Renal Disease (Medicare, 2014).

Medicare was created in 1965 by President Lyndon B. Johnson as a social

reform known as The Great Society, which strived to eliminate poverty and


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racial injustice within the United States. In 1982, congress passed the

Medicare Hospice Benefit, which offers patients and families multiple services

including pain and symptom management, emotional and spiritual support,

and both medication and medical supplies. Medicare insurance is funded

nationally by the government, which is supported and paid for by taxpayers of

the United States. All United States taxpayers pay 1.45% of earnings and

employers pay another 1.45% to the Social Security Administration, which

then funds Medicare (Medicare, 2014). Most individuals 65 years or older who

are permanent residents of the United States are eligible for Medicare

coverage.

The next biggest source for hospice funding is non-governmental, private

insurance coverage. For United States citizens, private insurance is the main

source of health coverage. If an individual is not covered, or only partially

covered by a governmentally funded program, a private insurance plan will

need to be obtained. In 2012, 7.6% of patients receiving hospice care were

covered by private insurance plans. For individuals needing hospice care that

cannot afford private insurance and are unable to receive governmentally

funded Medicare coverage, some uncompensated, or charity care is

available.

Many non-governmental associations within the United States have also been

created in order to support and drive research related to end-of-life and

hospice care. One of these organizations is the Hospice Foundation of

America (HFA). HFA provides leadership in the development and application

of hospice and its philosophy of care with the goal of enhancing the U.S.

healthcare system and the role of hospice in it (HFA, 2014). The National

Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit

organization committed to improving hospice care and enhance the quality of

life for individuals during this time. Serving as an advocate for the terminally

ill, the NHPCO provides educational programs and resources, conducts

research, and monitors Congressional and regulatory activities. This

organization also works closely with other organizations that share a passion

for improvement and advancement in hospice care. An example of this is


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Caring Connections. Caring Connections was created by the NHPCO and

provides free resources to help clients and families make difficult decisions

about hospice care (NHPCO, 2014).

Physicians, nurses, and medical professionals within the United States can

also promote and work towards an advancement in hospice and end-of-life

care on both national and local boards. The American Board of Hospice and

Palliative Medicine (ABHPM) advances hospice care by developing standards

for practice and quality care for clients and families. Within Missouri and the

Midwest, the Missouri Hospice and Palliative Care Association (MHPCA) is a

state wide, non-for-profit organization with the mission to support and

strengthen coordinated care for the terminally ill Missourians and their families

through the advancement of hospice and palliative care (NHPCO, 2014).

With life expectancy consistently increasing, and the older population

projected to increase from 40.4 million in 2010 to 55 million in 2020, hospice

care is essential (Mauk, 2014). The government and non-government

organizations all play a major role in addressing community health concerns

within the US. In order to meet the increasing demand for hospice care,

performance and quality must somehow be measured in order to make

improvements and continue to grow. NHPCO provides hospice patients and

their family evaluations to identify components of quality care, discover what

areas of care are effective, and target specific areas for improvement. In

2012, the overall rating of the Family Evaluation of Hospice Care (FEHC), or

percentage of individuals rating the quality of hospice care excellent, was

73.5% overall with a global measure of hospice quality at 85.8% (NHPCO,

2012). In order to continue to meet the appropriate demand in the near future,

these organizations must continue to grow with funding, volunteerism, and

health professionals steadily increasing. The United States and its hospice

organizations must plan appropriately by allotting enough money and

resources to provide quality care as the field continues to grow.

In Finland adequate social, health and medical services (Taperi et al., 2009,


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p. 39) are guaranteed by public authorities as stated in the Constitution. The

resident Finnish population has the right to suitable health services

irrespective of the ability to pay and residence place. One of the main long-

term goals for healthcare policies in Finland is the equal distribution of

services and costs, as well as to promote, improve and maintain the

populations physical and mental well being (Anttonen et al., 2011).

The Finnish healthcare system is very similar to those in other Nordic

countries. It offers universal coverage for a broad variety of health services,

which are manly provided publicly and are funded mostly through general

taxation (Taperi et al., 2009). This system, however, is also very

decentralized; in fact, local municipalities (which are 348, p. 37) organize and

provide primary healthcare services for their residents, receiving funding for

this through taxation and state subsidies. Furthermore, alongside this public

municipal healthcare system, the Finnish population receives partial

reimbursement for private healthcare services through the statutory National

Health Insurance scheme, which falls under the Parliaments authority and is

run by the Social Insurance Institution, covering also some family and housing

benefits, rehabilitation, basic unemployment security and students aids.

Private sickness insurance is uncommon in Finland: in 2005 only 5% (p. 42)

of the adult population had purchased a private healthcare insurance scheme.

To conclude, looking at the classification of the healthcare patterns around the

world as described by PNHP (2010), the Finnish healthcare system is a

mixture of the Beveridge model and the National Health Insurance Model, as

it manages and provides services at the governmental level and through tax

payments, combined with a governmentally-run insurance scheme.

The Finnish Ministry of Social Affairs and Health claims (2013) that health

among the Finnish population has gained better quality in the 21stcentury; life

expectancy has augmented incessantly, by around 25 years in less than a

century. Life expectancy is 76 years for men and 82 years for women. In

2012, Finlands population was approximately 5.4 million. Ageing is the factor

the mostly changed in the demographic structure. The over-65s represented

13.5% of the population in 1990; data indicate an increase to 17.5% in 2010.

In Finland, approximately 50,000 people die every year (Anttonen et al.,


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2011), mainly due to malignancies, cardiovascular conditions, accidents and

violence. Nearly 27,000 people develop cancer yearly; around 60% are cured,

whereas almost 10,000 die of it. Juha Hnninen, palliative care specialist,

argues hat cancer is the main condition seen in end-of-life care in Finland

(Salonen, 2008), although patients with any other type of terminal illnesses

can be referred to hospice care.

The Cancer Society of Finland was established in 1936; it is one of Finland's

largest public health organizations, comprising 17 registered member

organizations, 12 of which are regional cancer societies, and 5 are nation-

wide patient organizations. Connected to the Cancer Society of Finland are

also the Finnish Cancer Foundation, the Finnish Cancer Registry and the

Finnish Foundation for Cancer Research. Donations, bequests and

fundraising represent the main funding sources for the Cancer Society of

Finland, together with fees for services of the laboratory and outpatient clinics,

membership fees and funds of the Finnish Slot Machine Association. Main

fields of activity of the Cancer Society of Finland include health promotion,

public information, patient support and rehabilitation, advocacy, fundraising,

cancer screenings as well as maintenance of clinics, laboratories and

hospices.

Finnish palliative care services are not funded directly by the government, as

the Finland Country Report, Atlas 2007 states (EAPC Taskforce, 2014);

hospices are society-based and funded by the communities (p. 59). The

Finland Report 2008 (EAPC Taskforce, 2014) clarifies that the two hospices in

Finland founded in 1980s, Pirkanmaa Hospice in Tampere - the first hospice

for Finland and the whole Scandinavia, and Terhokoti Hospice in Helsinki, are

funded by private foundations and cancer societies (Cancer Society of

Finland, 2012). Salonen (2008) adds that the same applies for the other two

Finnish hospices, Karinakoti in Turku and Koivikko in Hmeenlinna. Patients,

however, pay as much as in public hospitals (around 18USD) as the

municipality pays the fees.

Over the years Finland has been working hard on terminal care, aiming at

making it more systematic and uniform through the whole country (Ministry of


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Social Affairs and Health, 2010). In fact, the recommendations on terminal

care published in 2010 were supported for the first time by legislation, which

meant Parliament focused on pain relief and end-of-life care as a basic right

and choice for each individual.

The European Association for Palliative Care (EAPC, 2014) presents a list of

the EU countries where Palliative Care has acquired the status of medical

specialty; Finland was certified in 2007. In fact, in the Atlas of Palliative Care

in Europe 2013, Centeno et al. (2013) trace Finlands milestones in palliative

medicine: in 2007 the first 2-year long program began as a medical specialty,

and in 2008 the first national guidelines on end-of-life care were produced,

recently updated in 2012. The 2007 version of the Atlas (EAPC Taskforce,

2014) reported that it was difficult to estimate Finlands palliative care

workforce capacity, as well as the number of nurses working in palliative care,

since they were a mixture of hospices, palliative care units, home care teams,

and health care units. The 2013 Atlas version, instead, depicts a clear picture

of the 23 palliative care services in Finland as of 2012, with 4 inpatients

hospices, 12 home palliative care support teams.

4. Health Services available to vulnerability group

With hospice care within the United States defined as the caring, not curing

treatment for patients at the end of life many health services are available for

both clients and their families during this time. Hospice care is considered the

model for quality compassionate care for people facing life-limiting illness

(NHPCO, 2012). This form of care utilizes an interdisciplinary team made of

up multiple health professionals including nurses, volunteers, physicians,

spiritual counselors, social workers, home health aides, and therapists to

name a few. Although most hospice clients are older adults, hospice care is

not limited to older adults and does not discriminate based on terminal illness,

age, religion, race, or any other factors.

Among its major responsibilities, the interdisciplinary hospice team manages

the patients pain and symptoms, assists the patient with the emotional,


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psychosocial, and spiritual aspects of dying, provides needed drugs, medical

supplies, and equipment, instructs the family on how to care for the patient,

delivers special services like speech and physical therapy as needed, and

makes short-term inpatient care available when pain or symptoms become

too difficult to treat at home or the caregiver needs respite; it also provides

bereavement care and counseling to surviving friends and family (NHPCO,

2012).

Hospice care provides services both in the home and on an inpatient basis. If

the client has access to care and hospice coverage, he or she will receive

routine home visits at the place where he or she lives. If necessary during

periods of crisis, or to keep the patient at home for comfort issues, the client

may receive continuous home care provided by licensed nursing

professionals on a constant basis. Within the scope of hospice care, general

inpatient care is also included. General inpatient care is often provided related

to pain control and management of symptoms that are unable to be managed

in the home. Finally, hospice care offers inpatient respite care for caregivers

on a short-term basis. This aspect is necessary to prevent caregiver strain

related to the constant supervision needed by clients in hospice care.

Included in hospice care is the care for not only the individual but the family as

well. This type of care encompasses both the emotional and spiritual needs

tailored and individualized to each client and family. Health professionals must

advocate on behalf of the client and respect the wishes of the client through

culturally competent, quality care (NHPCO, 2012).

In Finland, hospital districts and health centers are responsible for the

implementation of hospice care. Palliative care is carried out most commonly

at health centers or wards. For instance, one of the 4 hospices in Finland,

Terhokoti Hospice in Helsinki, provides palliative care to approximately 350

patients and their relatives every year (Anttonen, 2011). The services are

available through the hospice-based homecare, the hospice day care unit,

and the 17-bed hospice ward. The Finnish recommendations for terminal care

(Ministry of Social Affairs and Health, 2010) highlight that people should be


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able to decide where to be provided end-of-life care, whether at home, at a

health center or hospital ward, or in a hospice, or also at a nursing home.

If the person wishes to be treated at home, the family attends to his/her basic

needs, such as eating and personal hygiene, but can always request the

assistance of specialized home care teams; staff from municipal or private

home nursing care services are in charge of medical treatments; the patient is

still supposed to visit the hospital on a weekly basis for updates on symptoms

monitoring and general checkups. Palliative care is otherwise provided in

hospitals, health centers or hospices when symptoms management requires

stricter intervention and/or the patients need cannot be met comfortably at

home (Cancer Society of Finland, 2009b).

The doctor attending the patient is responsible for deciding to start palliative

care (Cancer Society of Finland, 2009a), and makes therefore a referral to

this service. Initially, an assessment is performed of the patients life

expectancy, based on type of disease, changes in functional capacity,

symptoms and general status. The key aspect is that patient should be as

comfortable and dignified as possible and symptoms are under control; this is

also achieved by offering pleasant and safe environments, and supporting

relatives and friends. Support to the family is also crucial, especially from the

psychological point of view. Family members are allowed to visit the patient at

anytime they wish; they also have the option to stay with their beloved at the

palliative facilities. If palliative care patients have special spiritual needs, such

as reading the Bible, singing hymns or praying, they are offered the

opportunity to do so. The family is constantly updated about the patients

condition. Support continues after their beloved has died.

Palliative care is centered on written care plans, which are arranged together

with the patients, if applicable, and the family members (Ministry of Social

Affairs and Health, 2010). The key professional is the attending physician who

is responsible for any decision around care; a multiprofessional team works to

provide palliative care guided by evidence-based medicine and nursing

practice; the nursing staff consists of qualified nurses, practical nurses and

volunteers (Anttonen et al., 2011). The whole team works in cooperation to

provide good continuity of care, based on honesty, transparency, and a caring


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"(

environment both to the patient and the family.

5. Nursing Theories

The World Health Organization (2005) has strongly recommended that expert

palliative care be integrated in all levels of health care, given that it is needed

worldwide as an urgent humanitarian necessity for people affected by cancer

and other chronic incurable conditions. The overall goal of hospice nursing is

to provide comfort, care and support services to people who are terminally ill.

Hospice care helps them live the time they have remaining to the fullest extent

possible, while keeping them comfortable (Harkness & DeMarco, 2012).

Among various nursing theories, some help draw parallels between nursing

practice and hospice care; this is the case of Kocalbas Theory of Comfort and

Paterson and Zderads Humanistic Nursing Theory.

The comfort theory by Katharine Kolcaba stands out and applies directly to

the principles of hospice nursing; it builds upon Florence Nightingales theory

and recognizes that comfort is essential for patients (George, 2011).

Kolcabas theory breaks down comfort into three types: relief, ease, and

transcendence. Relief is defined as the experience of a patient who has had

a specific comfort need met. Ease is defined as a state of calm or

contentment. This type of comfort is more focused on the environment and

psychological state of the patient. Finally, transcendence is defined as a state

in which one rises above problems or pain. Transcendence comfort is

explained when a patient is able to rise above challenges that may occur in

care (George, p.13 ).

Kolcaba identifies four contexts of the human experience of comfort. These

contexts include physical comfort, psychospiritual comfort, environmental

comfort, and sociocultural comfort. The most obvious comfort needed and

expressed by hospice patients is physical comfort. This form of comfort

usually includes prescription medications to ease the pain of the patient in

order to make them as comfortable as possible in their last few months of life.


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")

Psychospiritual comfort includes everything that gives life meaning for an

individual. This entails self-esteem, self-concept, sexuality, and ones

relationship to a higher order or being. Environmental comfort pertains to

external surroundings, conditions, and influences on ones health.

Sociocultural comfort involves interpersonal, familial, and societal

relationships. This also encompasses finances, education, and support

(George, 2011).

All of these contexts work together to promote the health of the hospice

patient. If the patient is comfortable physically, they are more likely to be

mentally and emotionally well. The nurse also must work to provide comfort

on the psychospiritual level to aid in mental and emotional well-being. This

helps the patient find a sense of peace and acceptance with ones life before

passing on. A healthy environment that is conducive to the patient helps to

provide a different sense of comfort. Finally, sociocultural comfort allows for

the patient to feel supported by loved ones and be free from worries such as

finances during their end stage of life.

The role of the hospice nurse according to this theory is to assess the

patients comfort needs and create a nursing care plan to meet those needs

based on all these contexts of comfort. As the patients illness progresses, it is

important for the nurse to adapt to changes and intervene as needed. As the

comfort theory explains, comfort is the most important factor in palliative or

end of life care, which is the sole focus of hospice nursing (George, 2011).

Paterson and Zderads Humanistic Nursing Theory (HNT) also integrates well

to hospice nursing as it emphasizes the humanity and uniqueness of every

human being, especially of their physical, psychological, social, spiritual and

cultural needs. Therefore, in tune with WHO definition of holistic health, the

patient is seen as a whole person, not just as an illness. As Wu & Volker

(2012) state, hospice nursing is centered on humanistic care since it values

the uniqueness of individuals and enhances patients autonomy; therefore,


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"*

HNT represents a suitable framework for nurses to respond to those

individuals who are at the end of their lives.

The first main concept of HNT is individual humanity and uniqueness

(Paterson & Zderad, 2007, p. 4): each person has a particular lens through

which they look at the world around them and give meanings and sense to

what happens to them, others and the wider environment (Wu & Volker,

2012). This applies to hospice care, where every patient responds to and

copes with their end of life very individually, most often on the basis of their

own experiences of life, as the hospice volunteers statements in Part 1

(Perspectives of Health) demonstrate. Related to this, HNT highlights

existentialism key idea that man is his choices, his history, his possibilities,

his present and future, what he has become and what he has not become

(Paterson & Zderad, 2007, p. 16); this is true for both patients and nurses, it is

a process of self-reflection that gives shapes and interpretation to events in

life, and can be easily applied to hospice nursing care and the end-of-life time.

If this process is effective, an empathetic and supportive relation develops

with the dying patient, and comfort, dignity and quality of life are provided in a

way specific to each individual patient. Paterson & Zderad (2007) emphasize

in fact that not only is well-being important in palliative care, but also the

more-being (p. 12), since nurses are concerned with helping the individual

become more as humanly possible (p. 12) within the limits of every patients

condition.

Humanism as presented by Paterson and Zderad stresses caring and

empathy, and the (self)awareness that each individual, both the patient and

the nursing professional bring their own viewpoint into the nurse-patient

relationship (Wu & Volker, 2012); therefore, the role of hospice nurses is to

enhance holism, dignity and quality of life, and to continuously advocate for

hospice patients and families best interest. HNT can represent a common

language through which planning care, portraying interventions and

collaborating within the interdisciplinary hospice team to cope with the

challenges of the end-of-life journey.


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#+

Primary, secondary, and tertiary prevention are important in promoting

emotional health in the hospice patient. While these levels of prevention

usually apply to preventing an illness, hospice nursing is all about the end-of-

life processes and illness prevention is not an option. Incorporating Kolcabas

comfort theory, as well as Paterson & Zderads Humanistic Nursing Theory,

caring for the patient on a palliative level while maintaining their physical,

emotional and psychological health is most important in hospice nursing.

Primary prevention for the hospice patient includes education on mental and

emotional health. The patient needs to understand the process of their

disease and the emotional effects that dying can have on an individual and

their family. The nurse should have a strong knowledge base about the

patients illness, the emotional factors involved in the end-of-life stages, and

deep awareness of individual emotional responses to the moment of ending

life. On the secondary prevention level, the nurse should frequently screen the

patient and their family mentally and emotionally and make sure they are

stable and have effective coping skills. These screenings can help the nurse

to detect early signs of emotional and mental instability, and achieve the

more-being as the HNT suggests. Hospice nursing focuses mainly on tertiary

prevention as nurses care for patients on a palliative level. This form of health

promotion may involve pharmaceutical interventions to make the patient as

comfortable as possible, but still includes counseling and treatment related to

the emotional and mental well-being of the patient and family (George, 2011).

These levels of prevention implemented by the nurse work with both

Katharine Kolcabas Comfort Theory and the Humanistic Nursing Theory, to

promote the individual uniqueness, their mental and emotional health, and

provide palliative care for the end-of-life patient and their family.


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#"

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Documents

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