This is a difficult topic. This is a guide which should able to give you some guidance if you need it. This guide does NOT offer mental or spiritual advice, just an overview on palliative care.
You may be wondering why the warning- simple: dealing with either life shortening illnesses or end of life care is hard to experience. I have seen family members go through this and it is never easy. This guide should be helpful and it will include my opinions, and where to find help in Japan. If you do comment, please remember this is an extremely difficult topic- everyone has their own opinions and needs.
What is palliative care?
Palliative care helps individuals and families that are dealing with life-shortening illness and end of life care. Life shortening illnesses could be ALS, cancer, motor-neuron disease etc. End of life care is usually helping with pain management, emotional, physical, and spiritual support to those whose time is limited.
What you must remember is that everyone has different needs and wishes. Some end of life treatment plans may include hospice care, home care or hospital care. Additionally, palliative care seeks to neither hasten nor post-pone death. It simple seeks to improve the quality of life.
In developing countries at time of diagnosis 80% of cancer is incurable and the only thing left is palliative care- which is still a ‘new’ concept in may countries but millions of people are seeing the benefits of it.
The best resource I have found to show the benefits of this is a YouTube video. Please check out the ‘further resources’ page for the link.
Going to a hospice does not mean a place to die, for many it is a place to live before death. If you are in a position where palliative care is necessary- remember you are still alive and there are still bills to pay, things to do- life does not stop.
Hospice care takes these worries away from a person at a time when they’re usually extremely tired and don’t have much energy. For cancer patients, they can (and usually do) outlive their prognosis and are discharged from hospice care and in extremely rare circumstances return to a normal life (this is from a terminal prognosis).
For others, it is a place to help prepare one’s self and the family for the end.
Japanese hospice care
There are an estimated 300 hospice programs in Japan since the start of the program in the 1970’s.
Hospice care works with one basic principle: quantity rather than quality. For end-of-life treatment, emotional support and pain relief is at the heart of care. However, the hospice movement was a late movement in Japan. Many other countries had programs and support systems in place before Japan and in some respects Japan is catching up.
Therefore, end-of-life treatment in Japan primordially takes place in hospitals, and at home.
The Japanese hospice palliative care foundation looks to improve the image of palliative care in Japan as it is only seen as a place to die not as a place to live.
Home hospice care starts with a care plan with one member becoming the leader of a persons care. Doctors, nurses, people who supply medical equipment etc come together with the patient and family to talk about their goals of care, what they would like and what their family would like.
Home hospice treatment is supported by doctors and nurses trained in palliative care to ensure that (especially in Japan) terminal cancer patients have all the support they need. Home hospice care is becoming even more important in Japan due to 2 factors: an aging population and a short-fall of hospital beds.
Another reason for the rise of home hospice care is cost. For people under 70, a hospice can cost 469,000 JPY a month with a 70% reduction- this could be as little as 93,000 JPY a month- which is still, in my opinion, an unreasonable amount of money. For those over 70, hospice care costs 57,600 JPY a month- which is still expensive. Home care is cheaper- just a consultation fee, medical equipment fees and care support costs are needed.
However, home hospice care is not what most Japanese want. Many Japanese do not wish to be a burden on their families and would prefer to experience hospice care in a hospital setting. This is one of the things that the Japan Home Hospice Association is trying to combat.
There are brilliant resources in Japanese and English- the English resources are more limited. The key focus of this article was awareness and to give you a better understanding of what palliative care in and what your options are if you are researching it.
Thank you for reading and enjoy exploring.