From blogs, videos, podcasts and interviews, here you'll find resources that answer your questions about being an end-of-life doula.
her own personal journey but that of everyone.
Because of who she is as a person, one of the unexpectedplaces she has strongly showed up in is in this initiative I am posting below. I could not be more proud of her and of all the people who are working so hard for palliative care in Ecuador and around the world, especially in areas where there is very little understanding and support.
If people truly understood, they would support it. This group is a perfect example of this. They are changing laws. No small deal. This is HUGE!!!!! They are educating, people are listening and they are supporting change in one huge area where it counts, in the laws.
Please read below. It is possible. Anything is possible with passion, some support and educating and sharing and holding a space around you for others to learn how they can change an entire culture of fear and powerlessness to information, choice and empowerment.
Yay Ecuador! Yay Mexico! Onward!!!
Sophia sent this to me this week. I asked to tell me what was going on. Here you go. You can bring this to your country.
Agreement against Cancer Project in Ecuador. "Acuerdo Contra el Cancer"
This Project has been forming and fighting for more tan 7 years with local and federal governments, getting every time more support, but not enough to change laws. Since last year, the project began a new challenge which is another way to make it an entire new law instead of changing the existing one. Many institutions which are part of this initiative got together to make this happen. Most of them are non profit organizations including FECUPAL which is the one I am working with (Federacion Ecuatoriana de Cuidados Paliativos) the Ecuadorian Federation of Palliative Care.
"...In Ecuador we have this option to go through the National Electoral Authority and
request a procedure of getting enough signatures, which is equivalent to a percentage
of the total Ecuadorian population, and after getting this minimum number of
signatures (they are audited and validated in a very strict way) the process goes directly
to Congress for discussion. This is big because this way we avoid the very long and
frustrating process it takes to create or change laws in the regular way.
The process is not easy at all, they gave us 90 days to get the requested signatures, so
it was a challenge, because our goal was to get twice as many signatures needed,
because in the process of authentication they discard so many signatures. We got
even more signatures at the goal, we had thousands of volunteers nationwide getting
signatures, and socializing it through media, and social media."
See Here: https://www.facebook.com/.../a.18360.../1995886530642047/...
Acuerdo Contra El Cáncer. Este es un ejemplo de unión, esfuerzo y esperanza. Hoy, superamos las expectativas entregando 159.786 firmas al Consejo Nacional Electoral del Ecuador, lo que convierte al #AcuerdoContraElCáncer
In general, the Agreement states the right of cancer patients to receive an integral treatment, meaning not only physical treatment, but psychological and even spiritual help. It states the need to have a multidisciplinary team to treat the patient during the process, and this is where palliative care is included. For the first time in the Ecuadorian law Palliative care is recognized as part of medical treatments in the country and the need of this as part of the multidisciplinary team for patients and families, but also it would make it mandatory for public institutions to have palliative care units for patients. Any person in need of palliative care who has social security should have access to it by law.
The Agreement also mentions the right for the family to be involved throughout the process, and having the right to get psychological support, and to have time off to take care of the person who is ill. A parent, a child, a brother or sister, or husband or wife. So if you have a person in this category you can request time off like medical leave to take care of them. This is specially important for parents with sick children because right now, they need to work in order to pay the huge bills, but cannot take care of their sick child and it is devastating. Most have had to quite their jobs, but then their situation does not get any better.
This is a very important movement which has passed the first step, now it goes to the Electoral authority and then to congress. If this goes the way we expect, this will change the way we treat terminal patients in a big way, for the better. I will let you know how this goes, but it is so exciting to get so much support!
Last week, the leader of the movement, Wilson Merino, was invited to speak and joint the Union for International Cancer Control UICC at the World Summit of Leaders Against Cancer in Mexico, where Presidents and world leaders were present. The Union recognizes the historic work of the organizations who are part of the Project Agreement Against Cancer. Stay tuned!