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COMMUNITY-BASED HOSPICE AND PALLIATIVE CARE SERVICES IN SOUTHERN METRO
MANILA AND NEIGHBORING PROVINCES IN THE PHILIPPINES: A CROSS-SECTIONAL SURVEY

 

*#Nanette
Ramilo-Cruz, MD; #Raymond Oliver A. Cruz, MD; +Rumalie A.
Corvera, MD

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*Managing
Consultant, The Ruth Foundation for Hospice and Palliative Care

#Associate
Professor, San Beda College of Medicine

+ CEO and Board
Member, The Ruth Foundation for Hospice and Palliative Care

 

Abstract

 

The rising Philippine population results in a proportionate increase in
the aging population and its health care needs. 
In order to determine the demographic characteristics and needs of
palliative and hospice patients in southern Metro Manila and surrounding
provinces seeking care in a non-institutionalized setting, a chart review of
399 patients from 2 community-based hospice and palliative care programs was
undertaken.  Results show that the usual
demographic profile of a patient seeking hospice and palliative care in the
community setting of southern Metro Manila and neighboring provinces is female,
51-60 years old, with a diagnosis of cancer, breast cancer being the most
common.  Majority had undergone prior
chemotherapy or radiation therapy. 
Hypertension was the most common co-morbidity associated with the
primary diagnosis, and pain is the most common symptom reported.  Children are the primary caregivers of these
patients at home, and written advance care directives were unavailable on
initial consultation.   The most common
spiritual concern of patients is not the fear of death, but being a burden to
their family members.  Complementary
services may be needed in order to help patients and their families cope with
the terminal illness. These may include social work to help connect the family
to other institutions that provide free medicines, counselling sessions both
for the patient and family, respite care or providing a day off for the
caregivers, and skills training for the primary care givers.

 

Key words: end-of-life
care, advance care directive, cancer, spirituality

 

INTRODUCTION

 

The Philippine population is steadily rising to more than
100 million based on the 2015 Population Census. In the southern part of Metro Manila and the neighboring provinces of
Cavite, Laguna, and Batangas, we have been seeing dramatic increases in
population density in the last twenty years. Of the 81 provinces in the country,
Cavite was the most populous in 2015 with 3.68 million, followed by Bulacan
(3.29 million), and Laguna (3.04 million) (1).

The increase in
population also results in a proportionate increase in the aging population.  It is also expected to result in escalating concerns
regarding proper medical care at the end of life.  According to the Philippine Commission on
Population, the population 60 years
and above, or senior citizens in the Philippines, increased from 3.2 million in
1990 to 4.6 million in 2000, then to 6.2 million in 2010 (2).   

To address this
phenomenon, an investigation of the population attributes leading to the
provision of hospice and palliative care services must be made. The Philippine
Cancer  Society (3)
established the country’s first home care program for indigent, terminally-ill
cancer patients led by a multidisciplinary team made up of a doctor, nurse and
social worker. A number of non-governmental
organizations (NGOs) and private groups followed suit and put up similar
services. However, support from the government still leaves much to be desired
due to inequity (4). According to a study by Lynch, the Philippines
belongs to Group 3a, that is, Isolated
Palliative Care Provision.  This means
that palliative care exists but is not well-supported in the country (5).   There is also limited availability of opioid
drugs for pain relief (6), and  only a few training institutions are available
for hospice and palliative care.

Palliative and
hospice care at home is not confined to cancer patients only. A study done at
the Philippine General Hospital in 2005 revealed that around 5% of patients
discharged from the Department of Medicine required home care services, and not
all of them are cancer patients.  The top five indications for home care were the
presence of decubitus ulcers, debilitation from cerebrovascular disease (CVD),
presence of indwelling catheter, cor pulmonale, and presence of a nasogastric
tube (NGT) for feeding.  The top five
diseases necessitating palliative care referral include diabetes mellitus,
pneumonia, congestive heart failure, hypertension, and chronic lung disease.
The children were the most common primary caregivers and financial supporters
of these home-bound patients. The average length of stay of the patients in the
hospital was also increased for those needing home care services.  It was mentioned that one of the factors that
increased the length of stay of these patients in the hospital is fear of
providing care at home without medical supervision (7).

Because there are only a few
studies in literature to assess the demographics and special needs of patients
with chronic and life-limiting illness among non-institutionalized patients in
the Philippines, there is a need to look into the demographic characteristics
of hospice and palliative care patients seeking medical attention at home.  

In this study, the goal is to
identify the attributes of patients with chronic and terminal illness seeking
home health care in the community by looking into their demographic and
epidemiologic profiles.  Specifically,
the objectives of this study are to:

1.       describe
the gender and age distribution

2.       identify
the most common diagnosis

3.       categorize
patients as to whether they are for hospice care or palliative care based on
their Palliative Care Screening Tool score

4.       identify
the most common co-morbidities

5.       identify
the most common symptoms

6.       identify
any history of substance use

7.       determine
how many patients seek alternative and complementary therapies

8.       identify
the primary caregiver of the patients

9.       identify
patients with advance care directives (ACD) during the first 2 home visits, and

10.   identify
psychological and spiritual issues upon initial consultation.

 

After identifying the demographics and attributes of patients with
chronic and terminal illness seen by health professionals in their home, we may
have the information we need to address the needs of hospice and palliative
care patients in the community setting.

METHODOLOGY

A review of charts dating from January 2011 to December 2016 from two
community palliative and hospice care providers in the Southern part of Metro
Manila (The Ruth Foundation for Hospice and Palliative Care in Alabang,
Muntinlupa; and Canossa Health and Social Center in Silang, Cavite) was done.  This does not reflect, however, the totality
of hospice and palliative care services in the Southern part of Manila and
neighboring provinces, as a number of private physicians and agencies also
provide hospice and palliative care services in the area. 

A total of 399 patient charts were reviewed.  Data were tabulated and summarized using
Microsoft Excel 2007. Only the first 2 consultation visits were assessed in
order to reflect the initial needs and concerns of patients before any
significant intervention has been undertaken. 

 

RESULTS

Most of the patients seeking hospice care are female (267 out of 399, or 67%).  Majority of patients belong to the 91 to
100-year-old group (83, 21%), because during the early years of the Ruth
Foundation, they actively sought out elderly patients nearing 100 years old
because of the monetary benefits given to centenarians by the Philippine
government (8). The 51-60 age group comes next (80, 20%).    Only 42 of the 399 patients are 40 years old
and below.

The most common
diagnosis on initial visitation was Cancer (179 out of 399, or 45%), followed
by Sarcopenia (86, 22%) and Cerebrovascular Accident (42, 11%)(Figure 1).  Of the 179 cancer patients, 128 (72%)
underwent chemotherapy or radiation therapy in the past. 

Figure 1.  Summary of Patient Diagnosis on Initial Home
Visit. 

 

 

Forty-eight out of 179 patients with cancer (27%) had breast cancer .  Fifteen percent (26 of 179) had colorectal
cancer, and 12% (22 out of 179) had cervical cancer.  Pulmonary, head and neck, and uterine/ovarian
cancers had 19, 17, and 14 cases respectively.

                Most community-based hospice patients with
cancer were found to be in stage 4.   Some patients (46 out of the 179) had
undetermined stages because no diagnostic tests to determine cancer stage were
reflected in the charts.  A large number
of patients also had muscle wasting or sarcopenia, defined as “…a syndrome
characterized by progressive and generalized loss of skeletal muscle mass and
strength with a risk of adverse outcomes such as physical disability, poor
quality of life and death” (9). Six out of fifteen
chronically ill patients with End-Stage Renal Disease (ESRD) underwent
hemodialysis.

Majority of patients (156 out of 399, or 39%) were categorized under the
Palliative Category.   These patients may
have a few symptoms that need to be controlled. 
They range from being generally ambulatory to being wheelchair-bound, and
could still care for themselves. 
However, these patients could no longer do their usual activities of
daily living. Thirty-eight percent (151 out of 399) patients were already in
hospice category. 

Among the co-morbidities, hypertension was the most commonly reported
(111).  This was followed by pulmonary
infections (36) and Diabetes Mellitus (30). 
Joint diseases necessitating pain control and cognitive impairment are
also common (19 cases each). The most frequently encountered symptoms on
initial consultation include pain (233, 58%), arm and leg weakness (185, 46%),
weight loss (180, 45%), fatigue (177, 44%), and poor appetite (162, 41%)(Figure
2). 

 

Figure 2.  Most Common
Symptoms on Initial Consultation

Of the 399 patients, 34% reported having a history of substance
abuse.  They include alcohol beverage
drinkers (57), smokers (54), both alcoholics and smokers (19), and  metamphetamine users (4).  None reported the use of Cannabis, a controversial herb that may have positive effects for
pain alleviation. A significant number of charts (58 out of 399 or 15%) had no
data on substance abuse.  

Only 46 out of 399 patients (11%) reported using herbal and
multivitamin supplements in addition to standard treatment prescribed by
physicians.  Other complementary and
alternative therapies, such as acupuncture or faith healing, were not reported.

One hundred seventy out of 399
(43%) reported children as the primary caregivers of the patient.    This is followed by the spouse (85, 21%),
siblings (38, 9%), and professional caregivers (32, 8%).

Only 75 out of 399 patients (19%) had a written ACD on initial
consultation. Of the 324 patients who did not have ACDs, 120 (37%) preferred
oral directives to their family members. 
Ninety six (30%) were not ready to make written ACDs.  One hundred eight (33%) did not have any idea
about advance care directives.

 

Although
majority of the patients and their families were aware of their diagnosis, 89 out
of 399 (22%) felt that their knowledge regarding their disease condition is
inadequate.  Fifty-one (13%) of patients
and their families requested not to be informed of the entire details of their
illness, while 20 (5%) patients and their families reported confusion on why
their condition is deteriorating.

Coping with the illness was a dilemma reported by a majority of patients
(242, 61%).  Anxiety (129, 32%) and
sadness (55, 14%) were the other issues that were seen. Majority of the patients
reported having financial difficulties. 
Difficulties with adjustment and coping with change due to changes in
roles in the family were also seen.

In this study, 59 patients (55%) felt they are a burden
to their family.  Twenty-five (23%) felt
that they see no hope in their condition, and 16 (15%)  report that they fear death.

 

 

DISCUSSION

The preponderance of elderly hospice patients is not simply due to the
healthy status of younger age groups. 
Pediatric hospice care is not very common in the Philippines.  It may be harder to accept an end-of-life
condition in a young person, so referrals to hospice care are scarce (10).

Patients with incurable cancer
are offered the option of palliative chemotherapy, an intervention that is
unlikely to result in a major survival advantage.  However, it can improve tumor-related
symptoms, and palliative care positively impacts quality of life.  Patients receiving palliative care treatment may
also be given inaccurate information about the survival gain of palliative
chemotherapy (11). Many
patients with advanced cancer prioritize survival over quality of life (12), so healthcare professionals may
accede to their wishes to do something active about the disease (13).

The undetermined cancer stage in
some patients is mostly due to financial constraints. Patients are diagnosed in
the advanced stages of the disease, and are likely to suffer physically and
psychologically because of the limited resources for early diagnosis and
treatment (14).

The PCST (Palliative Care Screening Tool), developed by The Ruth
Foundation, is a combination of validated palliative care evaluation tools: the
Edmonton Palliative Performance scale (15), Eastern Cooperative
Oncology Group Scale (16), and Palliative Performance Status Scale (17).  This was used to categorize patients as
belonging to supportive care for observation only, palliative care, or hospice
care. The tool helps the patient care staff determine the goals of care for
each patient, and organize scheduled of visits.

Delayed referral to hospice care
is common (18).  Reasons that
need to be explored include: 1) doctors may not be aware of palliative and
hospice care service at home; 2) doctors do not want to refer patients to
another care provider for fear of losing them; 3) doctors view a referral to
palliative and hospice care as a personal failure in management; and 4) the
patient was already advised by their doctor regarding palliative and hospice
services but the family opted to delay consultation.

Managing co-morbid conditions in patients with life-limiting
illness require an active review of drug therapies to balance the problem of
diminishing benefits with increasing side effects.  Some drugs may need to be discontinued as
systemic changes occur.  Data on number
needed to treat can be used to arrive at decisions.  As prognosis worsens for a given condition,
the number needed to treat usually increases (19).

The Philippine Health Insurance Corporation (Philhealth) has a program
that provides for a maximum of 90 sessions of hemodialysis per calendar year (20).
Patients with ESRD are candidates
for palliative care, because they face certain death unless they receive active
treatment in the form of renal replacement therapy (RRT) (21). Inspite of the
continuous improvement of dialysis technology and pharmacological treatment,
mortality rates for dialysis patients are still high (22). Integrating hospice and palliative
care into ESRD management is necessary to address the needs of an
aging ESRD population (23).

Early identification of behavioral risks for addiction in patients
receiving opioids for chronic pain is essential in order to improve clinical
outcomes. However, the possibility of addiction must not hinder a hospice and
palliative care practitioner from prescribing opioids when needed (24).

Many herbal medications contain
bioactive compounds that can be helpful in the treatment of multiple medical
conditions. However, the increasing popularity of over-the-counter (OTC) herbal
preparations presents a unique set of problems, such as toxicities due to
contamination, and interactions with mainstream medications (25, 26).
A patient’s reluctance to disclose their use of herbal supplements to their
physicians or pharmacists increases their risk for herb-drug interactions. Contamination of herbal products with heavy metals such
as lead is also a major concern (27, 28).

A primary caregiver has the main responsibility to oversee care for
patients who could no longer carry out activities of daily living such as
bathing, eating, and grooming. With a Filipino culture of having a tight-knit
and extended family, single children, even if employed, prefer to stay with
their parents. They also bring this culture with them even when they migrate
overseas and become overseas workers. Children prefer to take care of their
aging parents and chronically ill relatives over sending them to nursing homes (29).

The low number of patients having advance care directives upon initial
home visits may reflect the Filipino culture of avoiding discussion of death in
the family. This may lead to more stress in the family members as the impending
death arrives.  ACD planning improves end-of-life care,
patient and family satisfaction, and reduces stress, anxiety, and depression in
surviving relatives (30).  Despite the many benefits of
helping prepare the family and patient an advance care directive, the low result
of having an ACD may also reflect a possibility that health care professionals
contribute to this problem. Reasons could include time and skill limitations in
conducting care directive discussions; nurses and doctors may not be confident
to discuss this topic.  Legal
ramifications may also discourage health care practitioners from conducting
advance care directive counselling (31).

Emotional conditions of patients with chronic diseases are often
overlooked, and most of the time health professionals miss out on the incidence
of depression. Apparently, doctors may be good in managing biomedical
conditions but have difficulty in dealing with the psychological, social and
cultural dimensions of health and illness (32, 33).  Majority of patients actually
do not fear death. But the prospect of losing control of what one does,
experiencing uncontrollable symptoms, being unable to work, losing
independence, and becoming more dependent on activities of daily living are the
most difficult aspects of terminal illness to accept. When one could not accept
the inevitable, anxiety or sadness may be manifested. For those who could not
cope, depression may set in.

Traditionally, spirituality was always connected to the
religious aspect of one’s life. As different religions grew,  a shift in its meaning was observed.
Spirituality now deals more with the meaning of life and one’s purpose for
being,  without touching on the sensitive
issue of God (34).

It is important to note how patients see their life in
light of their current illness, and how they can still contribute to their
family (35).  As the illness
progresses and roles change, from being a physically independent member of the
family to someone totally dependent even in aspects of feeding and daily
hygiene, the condition takes a toll on how the patients see themselves. This
situation may eventually lead to more problems: non-compliance to medications,
isolation, and hastened deterioration of the patients.

Institutions and palliative care practitioners  should give more attention to non-physical
aspects of illness; the services of counselors, psychologists, and
psychiatrists must also be utilized. Palliative care education should not only
focus its attention on controlling physical symptoms but also empower health
care professionals and care givers to address these issues.  This will result in better quality of life
outcomes (36).

 

CONCLUSION

The usual demographic profile of a patient seeking hospice and palliative
care in the community setting of southern Metro Manila and neighboring
provinces is: 1. female, 2.  51-60 years
old, and 3. with a diagnosis of advanced cancer, most commonly breast cancer.  Majority of the cancer patients had already
undergone prior chemotherapy or radiation therapy.  Hypertension was the most common comorbidity
associated with the primary diagnosis. 
Pain is the most common symptom reported, and patients do not usually
subscribe to complementary and alternative therapies.  Children are the primary caregivers of these
patients at home.  There is often no
written advance care directive on initial consultation.   The usual problems encountered at home
include coping with the illness, sustaining the financial needs of the family,
and the patient’s feeling of being a burden to family members.  Most of the referrals for community hospice
and palliative care are from relatives or neighbors of previous patients.  It is recommended that a concerted effort
between government and non-government organizations be put into place in order
to strengthen community-based hospice and palliative care and address the needs
of these patients at home.

 

 

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