Bc Cancer Agency

our modern society is in an era that is fearful of death many people has a misunderstanding that palliative care means waiting to die it is not so i do not feel that she is my burden it is in weakness that god makes you strong life is unpredictable sickness and death are topics many people avoid as a result

we probably may not know what to do when we or our family fall sick the canadian government provides support for patients and their families one example is the federal government's compassionate care benefits if a critically ill patient with a risk of death in the forthcoming 26 weeks needs familial support and care

a family member is eligible for six weeks of unemployment insurance in these 26 weeks this provides some form of financial relief to the family member who has to leave the job temporarily to care for the patient palliative care is provided by provincial governments although the care is named differently in different places for example in taiwan and hong kong

they all refer to the same form of care tony has been a social worker for more than 20 years besides his regular job tony is also studying for a doctorate degree in “palliative care” during his many years of experience he has come across many patients at the end stage of their illness he is insightful on this topic

palliative care primarily focuses on three aspects the body, mind and soul so that in the course of their illness patients can feel comfortable with support in various areas many interpret “palliative care”as “end of life care” in chinese, i would interpret “end of life care” as taking care of a patient whose life may last for only a week or so

or even a few hours then we use “end of life”care because patients at their end of life have different needs “palliative care”includes “end of life care” but “end of life care” is not all that is in “palliative care” palliative care is a service provided for patients and their families

by the government or social service agencies just now tony has explained that this is a care for needs in three aspects, the body, the mind and the soul what does this service include? palliative care can begin when a patient is told by the doctor that he/she has an incurable disease it begins with the usage of different community resources including ontario's ccac

community care access centres sending nurses, home care workers volunteers, doctors and so on to the patient's home british columbia also has similar services the provincial government provides a palliative care benefits program while the health authority e.g. vancouver coastal health authority fraser health authority

bc cancer agency (bcca) canadian cancer society (ccs) and s.u.c.c.e.s.s. also provide support and help to patients and their families in the areas of finance knowledge, physical and mental care of course the first and foremost is to understand and respect the will of the patient if a patient prefers to stay at home even if it might be risky or inconvenient

the family and nursing staff have to respect that maria a longtime registered nurse in canada has visited many end stage patients in the home now she works for ontario ccac and is responsible for the co-ordination of nursing staff to provide appropriate care to the sick and the aged according to their needs i have been working with ccac for over six years in nursing co-ordination

simply said we accept referrals from doctors at hospitals after acceptance i will do a home visit and maintain contact with the family by phone usually after acceptance we provide the medical services ordered by the doctor generally speaking, there are three kinds of services firstly, what do we do

when the patient is weak and cannot walk? we would give the patient a walker or a hand rail to help him walk difficulty in bathing? we give him a bathing stool difficulty going to the washroom at night? we give him a commode to be placed beside his bed if bathing is still difficult then what do we?

we will send someone to bathe the patient if there are other symptoms like pain we will send a nurse who will work closely and regularly with the doctors if there is a need she would call the doctor about prescription medication and so on if the patient and family have difficulty in facing death and is under tremendous emotional and mental pressure

we would arrange for a social worker to meet and talk with them and see what can be done to help basically there are resources to help a patient and his family make the decision to let the patient spend his final stage in life at his own home many studies have shown that a patient who begins receiving palliative care as soon as he is told that he has lung cancer (for example)

his medical condition as well as his quality of life and his relationship with the family would be much better various support would make his experience better although palliative care is hard work some experience has deeply moved maria and is unforgettable an old lady had cancer she had no family her niece took her to her home

and cared for her until the very end i visited her three times the first time was when her situation deteriorated after the visit i call ccac to have some equipment sent to her home like the commode, bathing stool, walker and hospital bed after a few weeks i visited her again mainly to talk to her niece

about the care of the old lady how to help the old lady when she has certain conditions i visited her for the third and last time i told her niece that it was almost time she might have one or two days not more than a week you should be prepared if you are seeing something like this you should be psychologically prepared

maria did not realize that her thoughtful advice and care was so appreciated by the (old lady's) family that they sent maria a thank you card when i received the card my first feeling was“wow” in palliative care family members might feel the hope i never thought they could feel like this

but this is true when they are hopeless and know not what to do if someone would stand by them to support them to encourage them to go on they see hope in a hopeless situation what a special life experience to them they had a closer relationship with the old lady to me

the successful case was a mental boost letting me know that despite the difficulties the hard work palliative care is worth our continual support it does help the patients and their families to go on and to complete this last journey in the patient's life besides physical care as a professional social worker tony also has to take care of

the spiritual need of patients i had a patient his condition was critical he said his only wish was to see the rockies i knew that he could not even get out of bed it was really hard for me to think of a way to help him suddenly i had this amazing idea while he was asleep we took out a big screen

it was the days of video tapes then and dvd was not popular we chose a documentary of a train journeying through the rockies when he woke up, we showed him the documentary after seeing it he cried and said to me thank you! though that was all he said

yet for me his wish was fulfilled as for spiritual care tony has an unforgettable experience praying together with a dying patient i suddenly asked her can i pray with you? she nodded her head i said: i am a catholic

i only know ‘the lord’s prayer’. is that okay? she also nodded so i began to pray ‘the lord's prayer' it seemed like ages before i finished praying when i turned to look at the patient i felt that she was smiling but actually she had passed away i believed that god had helped her through my praying the lord's prayer with her

apart from nurses and social workers family members play a very important role in palliative care edwin's mother died of cancer in 2013 in 2010 when edwin learned that his mother had cancer he decided to retire early to take care of his elderly mother during this time what could i do for her? at first i prayed with her

before that i never prayed and did not know how to pray so i went to church and brought home a pamphlet for praying the rosary she taught me how to pray my mother also gave me a rosary so i prayed the rosary with her every night how did edwin feel about taking care of her ailing mother by himself?

how did he accomplish this role? what special training was required? i really had not taken any courses when there was a need i asked and someone would teach me for example my mother had assistance from carefirst to help her bathe they came to bathe her three times a week the service my mother used was called housing aid

this is a government subsidized program to provide service to the chinese population the housing aids are all chinese they serve the chinese elderlies who do not speak english my found that the housing aids who were sent to us were nice and caring to the elderly apart from this

i could take care of all other housework such as cooking if you love a person no matter how much time and effort you have to spend you would never feel that it is a pain or a waste of time however if you do not want to do it right from the beginning you would find it disgusting even if you spend only an hour on the job

is caregiving painful and hard work? from my perspective it was a happy and gratifying experience because i could spend time with my mother in the final days of her life in my 60 years, i had not known my mother better and she had not known me better than in the last three years of her life very often, the affection for her

how she was cherished or loved was not expressed but in the last three years of her life i recognized that i would never have the chance to do so if i did not express my feelings to her then so i expressed my love to her without reservation when she was sick i believed it was time for me to pay back in fact, in paying back to her she taught me to be a devoted christian again

every one of us has to experience the tests of being born, becoming old, getting sick and passing away when in sickness or when dying many people begin to think about dignity dignity is based on our values many people think they lose their dignity when they need help to go to the washroom or to change their clothes in my view

these are only physical needs if you need someone to help you go to the washroom or to change clothes it does not mean that you have no dignity when the patient feels that he has no dignity it has a lot to do with how he is treated by his family friends medical and nursing personnel maria had met a couple

who made her realize that even when one was sick and could not take care of oneself to someone who loved him this patient not only had dignity his mere existence was enough to bring joy to both of them the husband had alzheimer's he lost his bladder control when he entered the room his hair was very messy

somewhat like those young people with a punk hair style his clothes were sloppy and did not fit him because he had lost a lot of weight he smelt of urine his wife went over to him held his hand and stayed close to him as if she was his young lover she leaned tenderly on his shoulder ‘this is mr so and so’

i could never forget this scene no matter how sloppy and foul-smelling he was their hearts were linked together with love i visited them again in the last stage of his life her husband was immobile and laid on his bed i asked her: do you feel lonely? she said: he is here i really wanted to cry to her

no matter what her husband's condition was like as long as he was living and could breathe she knew her husband was there with her as long as she felt like this she would not feel lonely because her husband was with her maria believes that even if a person cannot speak or is immobile he has an inborn dignity that

others cannot infringe upon when maria took care of patients who were unconscious she kept on communicating with them whenever i did something i would say: granny i am washing your face i am rolling your body to clean your back i am putting a blanket on you i am giving you medication

even if i did not have to touch her when i gave her medication like when i administered medication through the tube in her throat i would still say to her: granny, i am giving you medication i would tell her every procedure i did because of my respect for this old lady she could not speak

but it did not mean that she did not know a suffering jesus was in her as a christian you know that god is love (if) you love jesus christ who is in this patient you would treat this elderly lady with your heart and soul i said to her: granny tonight is christmas eve

can i sing a song for you? i started singing silent night after i sang two verses she opened her eyes and stared at the ceiling i saw her take a deep breath not a very deep one and then closed her eyes her breathing changed that is to say even if someone did not appear to be communicating with you

as long as she was breathing and her heart was beating she might still hear what you said at that moment, i felt peaceful why? i did what i could i told her today is christmas eve silent night and she knew despite palliative care can help and

support the patients and their families in their struggles it cannot be denied that the suffering from sickness is so hard to bear that some patients might rather die than to live on maria has encountered such cases i had visited two elderly people one of them was lying in bed in great pain he looked at the medication beside his bed and said:

maria i have this medication i can take them all when i am in great pain i have the compulsion to take them all to kill myself many patients want to commit suicide because they could not see the meaning of suffering for christians we believe that god who loves us allows us to suffer to strengthen our faith through tribulations

so that we would rely on and love god more this old man’s faith made him understand that he could not give up his life and must strive to live out the remaining time that god had for him he said to maria: i know god is love my life is from god i cannot kill myself so i did not do that

i prayed and asked god to help me for those who have religious belief prayers can effectively support and provide energy and drive to the patients and their families on the other hand it is important for the family to be with the dying to give them comfort and peace for the dying do they have family around them

to encourage and support them in the last journey? whenever i got a call from a family member telling me his father or his mother had passed away the first thing i asked would be: was there anyone with him at that time? we were there we were with him and saw him pass on i said: that's great there is nothing anything you can do better

for her or for him that is a very beautiful ending when life ends, a new life commences death is the path everyone must go through to the new life edwin recalled what his mother perceived before she died she (mother) began to say to me that we came to this world for a test if we pass the test

we would return to where we should be during this time i got along very well with my mom because she was willing to entrust (to god) i was relieved we both understood that this (life) is transient she passed the test and up she went now i am doing my best to purify myself hoping that one day i will be re-united with her again a lot of people look at palliative care

or even life itself in black and white one who is not living is dead but i regard palliative care as a grey area to connect the black and the white in a nutshell, palliative care ward hospice and palliative care help patients live a richer life it is hoped that the patients could find a direction in life

during their last stage of life if they had lost direction some might say: he is dying who cares about direction in life? i would reply: dying is not the same as dead he is still living as long as your have not been certified dead physically you are living why are you spending energy on death

always thinking about death? why not think about how to live? in fact, this is most important people are afraid of death because they do not know about the world after death the catholic faith teaches us that when we leave this world we will not suffer anymore forever we will be with god

and forever we will live in his love death takes us to that better world palliative care on the one hand can help patients understand the meaning of life in this world and have a perfect ending on the other hand, it prepares the patients to welcome the arrival of the future life whether we only have a day, a month or a year to live we should embrace every day

to live out fully the meaning of life if we live well every present moment our lives are well lived