COMMUNITY-BASED HOSPICE AND PALLIATIVE CARE SERVICES IN SOUTHERN METROMANILA AND NEIGHBORING PROVINCES IN THE PHILIPPINES: A CROSS-SECTIONAL SURVEY *#NanetteRamilo-Cruz, MD; #Raymond Oliver A. Cruz, MD; +Rumalie A.Corvera, MD *ManagingConsultant, The Ruth Foundation for Hospice and Palliative Care#AssociateProfessor, San Beda College of Medicine+ CEO and BoardMember, The Ruth Foundation for Hospice and Palliative Care Abstract The rising Philippine population results in a proportionate increase inthe aging population and its health care needs. In order to determine the demographic characteristics and needs ofpalliative and hospice patients in southern Metro Manila and surroundingprovinces seeking care in a non-institutionalized setting, a chart review of399 patients from 2 community-based hospice and palliative care programs wasundertaken. Results show that the usualdemographic profile of a patient seeking hospice and palliative care in thecommunity setting of southern Metro Manila and neighboring provinces is female,51-60 years old, with a diagnosis of cancer, breast cancer being the mostcommon. Majority had undergone priorchemotherapy or radiation therapy. Hypertension was the most common co-morbidity associated with theprimary diagnosis, and pain is the most common symptom reported. Children are the primary caregivers of thesepatients at home, and written advance care directives were unavailable oninitial consultation.
The most commonspiritual concern of patients is not the fear of death, but being a burden totheir family members. Complementaryservices may be needed in order to help patients and their families cope withthe terminal illness. These may include social work to help connect the familyto other institutions that provide free medicines, counselling sessions bothfor the patient and family, respite care or providing a day off for thecaregivers, and skills training for the primary care givers. Key words: end-of-lifecare, advance care directive, cancer, spirituality INTRODUCTION The Philippine population is steadily rising to more than100 million based on the 2015 Population Census.
In the southern part of Metro Manila and the neighboring provinces ofCavite, Laguna, and Batangas, we have been seeing dramatic increases inpopulation 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 inpopulation also results in a proportionate increase in the aging population. It is also expected to result in escalating concernsregarding proper medical care at the end of life. According to the Philippine Commission onPopulation, the population 60 yearsand above, or senior citizens in the Philippines, increased from 3.
2 million in1990 to 4.6 million in 2000, then to 6.2 million in 2010 (2). To address thisphenomenon, an investigation of the population attributes leading to theprovision of hospice and palliative care services must be made. The PhilippineCancer Society (3)established the country’s first home care program for indigent, terminally-illcancer patients led by a multidisciplinary team made up of a doctor, nurse andsocial worker. A number of non-governmentalorganizations (NGOs) and private groups followed suit and put up similarservices.
However, support from the government still leaves much to be desireddue to inequity (4). According to a study by Lynch, the Philippinesbelongs to Group 3a, that is, IsolatedPalliative Care Provision. This meansthat palliative care exists but is not well-supported in the country (5).
There is also limited availability of opioiddrugs for pain relief (6), and only a few training institutions are availablefor hospice and palliative care.Palliative andhospice care at home is not confined to cancer patients only. A study done atthe Philippine General Hospital in 2005 revealed that around 5% of patientsdischarged from the Department of Medicine required home care services, and notall of them are cancer patients. The top five indications for home care were thepresence of decubitus ulcers, debilitation from cerebrovascular disease (CVD),presence of indwelling catheter, cor pulmonale, and presence of a nasogastrictube (NGT) for feeding. The top fivediseases 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 supportersof these home-bound patients.
The average length of stay of the patients in thehospital was also increased for those needing home care services. It was mentioned that one of the factors thatincreased the length of stay of these patients in the hospital is fear ofproviding care at home without medical supervision (7).Because there are only a fewstudies in literature to assess the demographics and special needs of patientswith chronic and life-limiting illness among non-institutionalized patients inthe Philippines, there is a need to look into the demographic characteristicsof hospice and palliative care patients seeking medical attention at home. In this study, the goal is toidentify the attributes of patients with chronic and terminal illness seekinghome health care in the community by looking into their demographic andepidemiologic profiles. Specifically,the objectives of this study are to:1.
describethe gender and age distribution2. identifythe most common diagnosis3. categorizepatients as to whether they are for hospice care or palliative care based ontheir Palliative Care Screening Tool score4. identifythe most common co-morbidities 5.
identifythe most common symptoms 6. identifyany history of substance use7. determinehow many patients seek alternative and complementary therapies8. identifythe primary caregiver of the patients9. identifypatients with advance care directives (ACD) during the first 2 home visits, and10. identifypsychological and spiritual issues upon initial consultation. After identifying the demographics and attributes of patients withchronic and terminal illness seen by health professionals in their home, we mayhave the information we need to address the needs of hospice and palliativecare patients in the community setting.METHODOLOGYA review of charts dating from January 2011 to December 2016 from twocommunity palliative and hospice care providers in the Southern part of MetroManila (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 totalityof hospice and palliative care services in the Southern part of Manila andneighboring provinces, as a number of private physicians and agencies alsoprovide hospice and palliative care services in the area. A total of 399 patient charts were reviewed. Data were tabulated and summarized usingMicrosoft Excel 2007. Only the first 2 consultation visits were assessed inorder to reflect the initial needs and concerns of patients before anysignificant 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 to100-year-old group (83, 21%), because during the early years of the RuthFoundation, they actively sought out elderly patients nearing 100 years oldbecause of the monetary benefits given to centenarians by the Philippinegovernment (8).
The 51-60 age group comes next (80, 20%). Only 42 of the 399 patients are 40 years oldand below.The most commondiagnosis on initial visitation was Cancer (179 out of 399, or 45%), followedby 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 HomeVisit. Forty-eight out of 179 patients with cancer (27%) had breast cancer . Fifteen percent (26 of 179) had colorectalcancer, and 12% (22 out of 179) had cervical cancer.
Pulmonary, head and neck, and uterine/ovariancancers had 19, 17, and 14 cases respectively. Most community-based hospice patients withcancer were found to be in stage 4. Some patients (46 out of the 179) hadundetermined stages because no diagnostic tests to determine cancer stage werereflected in the charts.
A large numberof patients also had muscle wasting or sarcopenia, defined as “…
a syndromecharacterized by progressive and generalized loss of skeletal muscle mass andstrength with a risk of adverse outcomes such as physical disability, poorquality of life and death” (9). Six out of fifteenchronically ill patients with End-Stage Renal Disease (ESRD) underwenthemodialysis.Majority of patients (156 out of 399, or 39%) were categorized under thePalliative Category. These patients mayhave a few symptoms that need to be controlled. They range from being generally ambulatory to being wheelchair-bound, andcould still care for themselves.
However, these patients could no longer do their usual activities ofdaily living. Thirty-eight percent (151 out of 399) patients were already inhospice category. Among the co-morbidities, hypertension was the most commonly reported(111). This was followed by pulmonaryinfections (36) and Diabetes Mellitus (30). Joint diseases necessitating pain control and cognitive impairment arealso common (19 cases each). The most frequently encountered symptoms oninitial consultation include pain (233, 58%), arm and leg weakness (185, 46%),weight loss (180, 45%), fatigue (177, 44%), and poor appetite (162, 41%)(Figure2). Figure 2.
Most CommonSymptoms on Initial ConsultationOf the 399 patients, 34% reported having a history of substanceabuse. They include alcohol beveragedrinkers (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 forpain alleviation. A significant number of charts (58 out of 399 or 15%) had nodata on substance abuse. Only 46 out of 399 patients (11%) reported using herbal andmultivitamin supplements in addition to standard treatment prescribed byphysicians.
Other complementary andalternative 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 initialconsultation. Of the 324 patients who did not have ACDs, 120 (37%) preferredoral directives to their family members. Ninety six (30%) were not ready to make written ACDs.
One hundred eight (33%) did not have any ideaabout advance care directives. Althoughmajority of the patients and their families were aware of their diagnosis, 89 outof 399 (22%) felt that their knowledge regarding their disease condition isinadequate. Fifty-one (13%) of patientsand their families requested not to be informed of the entire details of theirillness, while 20 (5%) patients and their families reported confusion on whytheir condition is deteriorating. Coping with the illness was a dilemma reported by a majority of patients(242, 61%). Anxiety (129, 32%) andsadness (55, 14%) were the other issues that were seen. Majority of the patientsreported having financial difficulties. Difficulties with adjustment and coping with change due to changes inroles in the family were also seen.
In this study, 59 patients (55%) felt they are a burdento their family. Twenty-five (23%) feltthat they see no hope in their condition, and 16 (15%) report that they fear death. DISCUSSIONThe preponderance of elderly hospice patients is not simply due to thehealthy status of younger age groups. Pediatric hospice care is not very common in the Philippines. It may be harder to accept an end-of-lifecondition in a young person, so referrals to hospice care are scarce (10).Patients with incurable cancerare offered the option of palliative chemotherapy, an intervention that isunlikely to result in a major survival advantage.
However, it can improve tumor-relatedsymptoms, and palliative care positively impacts quality of life. Patients receiving palliative care treatment mayalso be given inaccurate information about the survival gain of palliativechemotherapy (11). Manypatients with advanced cancer prioritize survival over quality of life (12), so healthcare professionals mayaccede to their wishes to do something active about the disease (13).The undetermined cancer stage insome patients is mostly due to financial constraints. Patients are diagnosed inthe advanced stages of the disease, and are likely to suffer physically andpsychologically because of the limited resources for early diagnosis andtreatment (14).The PCST (Palliative Care Screening Tool), developed by The RuthFoundation, is a combination of validated palliative care evaluation tools: theEdmonton Palliative Performance scale (15), Eastern CooperativeOncology Group Scale (16), and Palliative Performance Status Scale (17). This was used to categorize patients asbelonging to supportive care for observation only, palliative care, or hospicecare. The tool helps the patient care staff determine the goals of care foreach patient, and organize scheduled of visits.
Delayed referral to hospice careis common (18). Reasons thatneed to be explored include: 1) doctors may not be aware of palliative andhospice care service at home; 2) doctors do not want to refer patients toanother care provider for fear of losing them; 3) doctors view a referral topalliative and hospice care as a personal failure in management; and 4) thepatient was already advised by their doctor regarding palliative and hospiceservices but the family opted to delay consultation. Managing co-morbid conditions in patients with life-limitingillness require an active review of drug therapies to balance the problem ofdiminishing benefits with increasing side effects. Some drugs may need to be discontinued assystemic changes occur. Data on numberneeded 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 programthat provides for a maximum of 90 sessions of hemodialysis per calendar year (20).
Patients with ESRD are candidatesfor palliative care, because they face certain death unless they receive activetreatment in the form of renal replacement therapy (RRT) (21). Inspite of thecontinuous improvement of dialysis technology and pharmacological treatment,mortality rates for dialysis patients are still high (22). Integrating hospice and palliativecare into ESRD management is necessary to address the needs of anaging ESRD population (23). Early identification of behavioral risks for addiction in patientsreceiving opioids for chronic pain is essential in order to improve clinicaloutcomes.
However, the possibility of addiction must not hinder a hospice andpalliative care practitioner from prescribing opioids when needed (24).Many herbal medications containbioactive compounds that can be helpful in the treatment of multiple medicalconditions. However, the increasing popularity of over-the-counter (OTC) herbalpreparations presents a unique set of problems, such as toxicities due tocontamination, and interactions with mainstream medications (25, 26).A patient’s reluctance to disclose their use of herbal supplements to theirphysicians or pharmacists increases their risk for herb-drug interactions. Contamination of herbal products with heavy metals suchas lead is also a major concern (27, 28).A primary caregiver has the main responsibility to oversee care forpatients who could no longer carry out activities of daily living such asbathing, eating, and grooming. With a Filipino culture of having a tight-knitand extended family, single children, even if employed, prefer to stay withtheir parents.
They also bring this culture with them even when they migrateoverseas and become overseas workers. Children prefer to take care of theiraging parents and chronically ill relatives over sending them to nursing homes (29).The low number of patients having advance care directives upon initialhome visits may reflect the Filipino culture of avoiding discussion of death inthe family. This may lead to more stress in the family members as the impendingdeath arrives. ACD planning improves end-of-life care,patient and family satisfaction, and reduces stress, anxiety, and depression insurviving relatives (30). Despite the many benefits ofhelping prepare the family and patient an advance care directive, the low resultof having an ACD may also reflect a possibility that health care professionalscontribute to this problem. Reasons could include time and skill limitations inconducting care directive discussions; nurses and doctors may not be confidentto discuss this topic.
Legalramifications may also discourage health care practitioners from conductingadvance care directive counselling (31).Emotional conditions of patients with chronic diseases are oftenoverlooked, and most of the time health professionals miss out on the incidenceof depression. Apparently, doctors may be good in managing biomedicalconditions but have difficulty in dealing with the psychological, social andcultural dimensions of health and illness (32, 33). Majority of patients actuallydo not fear death. But the prospect of losing control of what one does,experiencing uncontrollable symptoms, being unable to work, losingindependence, and becoming more dependent on activities of daily living are themost difficult aspects of terminal illness to accept. When one could not acceptthe inevitable, anxiety or sadness may be manifested. For those who could notcope, depression may set in.
Traditionally, spirituality was always connected to thereligious 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 forbeing, without touching on the sensitiveissue of God (34). It is important to note how patients see their life inlight of their current illness, and how they can still contribute to theirfamily (35).
As the illnessprogresses and roles change, from being a physically independent member of thefamily to someone totally dependent even in aspects of feeding and dailyhygiene, the condition takes a toll on how the patients see themselves. Thissituation 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-physicalaspects of illness; the services of counselors, psychologists, andpsychiatrists must also be utilized. Palliative care education should not onlyfocus its attention on controlling physical symptoms but also empower healthcare professionals and care givers to address these issues. This will result in better quality of lifeoutcomes (36). CONCLUSIONThe usual demographic profile of a patient seeking hospice and palliativecare in the community setting of southern Metro Manila and neighboringprovinces is: 1. female, 2. 51-60 yearsold, and 3.
with a diagnosis of advanced cancer, most commonly breast cancer. Majority of the cancer patients had alreadyundergone prior chemotherapy or radiation therapy. Hypertension was the most common comorbidityassociated with the primary diagnosis. Pain is the most common symptom reported, and patients do not usuallysubscribe to complementary and alternative therapies. Children are the primary caregivers of thesepatients at home.
There is often nowritten advance care directive on initial consultation. The usual problems encountered at homeinclude 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 hospiceand palliative care are from relatives or neighbors of previous patients. It is recommended that a concerted effortbetween government and non-government organizations be put into place in orderto strengthen community-based hospice and palliative care and address the needsof these patients at home.