Team:SCUT-China B/HP/HP2
(1)what is hospice care
Definition
Hospice care or hospice is a type of care and philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs. It often gives up the pursuit of aggressive treatment and focus on the feeling of the patients.
History
In Western society, the concept of hospice has been evolving in Europe since the 11th century which means a place of concentrative areas for the sick, injuries, or dying, as well as those for travellers and pilgrims. The modern concept of hospice care which not only includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who would rather spend their last months and days of life in their own homes was pioneered in the 1950s by Dame Cicely Saunders.
There was no hospice care service in China until 1988 that the first modern free-standing hospice opened in Shanghai. Nowadays, there are hospitals or organizations providing hospice service in many cities in China.
Status quo
hospice care is quite controversy in China nowadays. Although there are voices calling for better hospice service and there is growing need of it as the society ages ,few people in China have a proper awareness about hospice care. There is such little information of that and the taboo of death still exists. Many people find it unacceptable to give up aggressive treatment of their lover which is often painful but might extend the life of the patients and let them “wait to die”. Also, many people can’t accept a hospice that is “full of dying people” appear near where they live and work because it means “bad luck” according to Chinese customs. What’s more, hospice care is still uncovered by social insurance system in China which means patients have to pay for the care themselves. There is lack of hospital beds in public hospitals and it causes more than 1000 yuan per day in private hospitals. There is still a long way to go for hospice care in China. Fortunately, more and more people become aware to the importance of hospice care and there are NGOs and universities working for it especially in well-developed cities.
(2)Why hospice care
It might sound strange for us to choose hospice care as one of the theme of our human practices. Our project is mainly about gene therapy for cancer in another word we are trying to “cure” cancer but we believe that we work not only for a cure but also for the patients themselves. It is patients’ feeling and living condition that should be focused on in search of a new cure. That is what we mean by “to cure and to care”. Most of the patients suffered from lung cancer are in terminal stage when they are diagnosed. It means that they can hardly be cured when then are found ill. So they need care on their heart and soul rather than the useless and painful effort of treating of their body. They need relief from the pain that they are suffering rather than to cure the illness. It is usually difficult for patients to accept the fact that they are suffering from really server illness and it will pass away soon. They need psychological help to face the situation and cooperate to treatment. All above are what hospice care can provide, and thus we want to work on hospice care.
(3)How to promote: Diary of Our Hospice Care Project
We didn’t know much about hospice care until we did this iGEM project. In our project, we attempted to induce the apoptosis of A549 cells, which cause adenocarcinoma of lung. Adenocarcinoma of lung is a kind of lung cancer and there are countless people who are suffering from stage IV lung cancer which can hardly be cured. In this stage what patients need are relief of suffering and care of their feelings but not only a cure and these are what hospice care for. We believe that a completed iGEM project should not merely focus on treatments, so we chose hospice care as the theme of human practice in order that we can make our project completed.
We do this in 7 steps.
Firstly we learnt about hospice care, what it is and what it can do.
We searched online and read some literature about hospice care ,therefore we have had some basic understanding about it. We have learnt that hospice care doesn’t provide cure to the illness itself but relief from symptoms and anxiety.
Secondly we did a research to know people’s idea and understanding about hospice care.
We found that hospice care was firstly introduced in 1967. But in China there wasn’t hospice care until 1988 when Tianjin Medical University set up the first institution for hospice care in China. It wasn’t a long time since hospice care appeared in China but it has developed well. There is more and more need of it as our economy growing and society getting aged. Unfortunately, it seems that hospice care hasn’t gained enough attention from Chinese government and companies. So we did a questionnaire in order to find out that how much do Chinese people know about hospice care and what do they think about it. Here is what we found through the questionnaire.
Here is what we found through the questionnaire.
Thirdly we visited a hospital which did well with hospice care and interviewed one of the founders of the hospice department of the hospital.
Though we have some basic knowledge of hospice care,more knowledge is needed if we want to push the development of hospice care. So we searched on the internet for organizations which are working on hospice care and we learnt that Hospital of Panyu Shiqiao has done it well. The hospital has set up a new clinic department called Kangning which means peace in Chinese for hospice care. We also learnt that Dr Xie Zhuoxi was one of the founders of the department. So we wanted to interview him for more understanding of hospice care.It was very nice of Dr Xie to accept our interview.
So we visited Hospital of Panyu Shiqiao for Dr Xie. We had a nice talk with Dr Xie and he told us a lot about hospice care. Firstly, he told us about present situation of the hospice department of Panyu Shiqiao hospital. The department had 107 beds. At the beginning, few people came for the service but now these 107 beds could hardly cater the growing need of patients. In the hospital, doctors and nurses specialised in hospice service and they were all well trained. Dr Xie told us their job was reliefing the symptoms of patients as well as providing psychological service to both patients and their families. He said most of the hospitals overlooked the psychological help for patients’ families but in hospice care, patients and their families were considered as a whole that facing illness and death together. The families were deeply in grief when the patient passed away and at this time they need help to ease the sorrow and lead them back to normal life. We were told that patients who received hospice service were in good mental and living condition. Some of the patients were even able to spend their last time of life at home. Hospice care really meant a lot to the patients. When we asked about the price of hospice care he showed us a research they had done. According to the research each patient had to pay 268 yuan a day but the health care insurance could cover 248 of them. It meant that patients should pay 20 yuan per day for the service. Besides this 20 yuan they had also to pay another 80 yuan for the staff that took care of them if their families couldn’t look after them by themselves. Receiving hospice service was much cheaper than staying in normal hospital for treatments. After the interview we had a better understanding to the good cause about its content and meaning and we were more willing to be a part in it in flesh: to be hospice’s volunteers.
Fourth we attended a seminar for volunteers of hospice care.
Hospice care is a special service that it requires well training. So we went to Tianhe Book Centre for Dr Xie Shuoxi’s lecture for hospice care volunteers to learn how to be a good hospice care volunteer. We learnt several rules that for example volunteer should not ask for anything from patients. One thing that impressed us most was that as a volunteer you should not let patients see your empathy for them. Different from what many people believe, showing empathy would just strengthen patients’ grief and despair from being ill and dying rather than comfort them. Volunteers mean a lot to the patients. Being a hospice care volunteer means great duty but can also learn a lot through the impressive experience. After listening Dr Xie’s lecture we decided to be a hospice care volunteer on our own.
In the fifth we went to Kangning department of Hospital of Panyu Shiqiao as hospice volunteers.
On 26th August we went to Hospital of Panyu Shiqiao and begin our first day as hospice volunteer. The patient who we met was a kind granny. We were kind of nervous before we met her. We were afraid that the granny would be so upset and pessimistic but after we introduced ourselves to her and started talking, we found that she was a quite nice and happy granny. She talked to us and offered us some fruit and even play jokes to us. She told us she only had a sister as her family, and now her sister was also quite old and had her own family, so granny didn’t want to bother her sister too much. Since her sister couldn’t visit her too often she always felt lonely in the hospital so she was very glad to have volunteers like us to visit her and talk to her. She said she will look forward to our visit . The nice meeting had to come to an end as the nice granny didn’t feel well with her leg. The granny made us feel that we were needed and what we did was meaningful. We decided to come and visit the nice granny more often, hoping bring her happiness and peace at the end of her life.
Sixthly we couraged our school to set up a volunteers team for hospice care.
While we were working in the hospital as hospice care volunteers we seldom see the families of the patients come to visit them. Even some people didn’t visit until the death of the patients. So many patients were lonely and suffered because of their illness. This wasn’t the aim of hospice care, and it can’t give the patients relief and peace of mind which hospice care promise to give them . So we need more people to devote themselves to this good cause and show their kindness and care to the patients, letting them pass away with less suffer, both physically and mentally. During the interview with Dr Xie we learnt that many universities have had their own team for hospice volunteer. School of Bioscience and Bioengineering of SCUT has a volunteer team which has a regular project in Guangdong Science Centre. But as biological major students we want something more connected with our specialty. So we want to set up a team for hospice care volunteering. We wrote a plan and discussed with our teachers. Finally we gained the approval of our school. Then we could start to recruit our volunteers.
Finally we recruited hospice volunteers in our school.
As what I’ve mentioned above, hospice volunteer is so special that it require well training. So we wanted to invite Dr Xie to come to our school to give a lecture about hospice volunteering. The application to invite an outside-school professor to hold a lecture in our school was complicated.We discussed with different teachers, telling them the necessity of this lecture to our volunteer team. With our effort, we finally gain the approval from school for the lecture. Then we began our preparation for recruiting volunteers and hold the lecture such as advertising, applying for classroom for lecture .etc.
We didn’t have much experience in it so it was challenging. We asked for advice from different people to design our leaflet and every member in our team took part in sending our leaflets. We were happy to see that many students were interested in the volunteer programme and we gave introductions and explanations with patient to let them have proper understanding to our programme. We also have our advertisement online to let more people know about it. It was nice to watch our plan come true step by step and we hope more students can take part in this good cause.
Future work
We will inform the students who are willing to attend the lecture given by Dr Xie and during the lecture we iGEMers will also share our experience as hospice volunteers. We hope this lecture will be able to let them have proper understanding of being a hospice volunteer. Then we will interview them and choose students who are suitable for the job to form our volunteering team.
After that we will give training to volunteers and organise them to visit the hospice department of the hospital twice a month. Before the visit we will spend time to ask the infomation of different patients. We hope the volunteers can bring joy and relief to the patients.
The end but not the end
We began with learning about tumour and lung cancer before we choose it as the theme of our iGEM project and now we extended it to hospice care which focuses on those patients who were hopeless to be cured. In the fight against disease, human being cannot always win. In this desperate fight with cancer, people need care more than cure. The development of science and technology is aiming to do something good to human. What we have done is far from enough. There are still misunderstandings against hospice care because of our customs especially taboo about death. We want more people to understand hospice care then pay attention on it, join it and promote it. A tiny team with tens of undergraduates may not be able to make a big difference but if there are slight changes or improvement made by our effort, that’s all we are persuing for.
