Talking about palliative care is not easy. In our monthly newsletter, we started a new series of articles that we hope will help you better understand what Acompalia is working hard to achieve and how the team and volunteers at Acompalia can help the communities, foreign and Spanish.
Let’s start today with basic facts: “What is palliative care and what are the most common myths?”
Let’s start by looking at what is defined by palliative care, sometimes also referred to as “End of life care” or “Comfort Care”, and let’s demystify a few common assumptions about this difficult subject.
What is really palliative care?
According to the World Health Organization’s Definition of Palliative Care, “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care is provided to any patient with an advanced illness, regardless of age, religion or gender.
On the ground, palliative care volunteers and professionals help the patients achieve the best quality of life until the very last breath. Good palliative care has a holistic approach to the patient focusing not only on his/her concerns but also addressing any concerns the family may have. The medical team provide relief from pain and do their best to observe and consider any other physical symptoms such as nausea, loss of appetite, hydration, confusion, etc. Let’s emphasize that the patient’s being is at the heart of their work and they will, as such, put an emphasis on respecting the patient’s dignity and will never hasten nor postpone death. Medical staff work closely with the team of carers that include volunteers, social workers, spiritual guides to ensure the emotional and spiritual concerns of the patients and families are respected and that all psychological, social and cultural needs are addressed.
More often than not, quality comprehensive palliative care goes one step further to offer a support network to the family to help them grieve the loss of their loved one, and manage the stress closely associated with bereavement.
Who provide palliative care and where?
A palliative care team is made of many healthcare providers, depending on the needs of the patient and the family. To cite only a few: nurses, family doctors, social workers, psychologists, spiritual guides, palliative care specialists, complementary therapists, physiotherapists, home care workers, personal support workers, volunteers.
Palliative care can be provided virtually anywhere. Different programs provide different services and support for patients wherever they may be: at home, in a hospice, in the hospital or in a personal care home.
Most people would rather die at home and choose to stay at home for as long as they and their family can. Supported by a team of dedicated specialists, family and patients, if made available to them, can choose to integrate a respite program in order to give the caregivers some relief. At times, home care programs are also available, enabling the patient to stay in the surrounding of his/her choice.
When the patient can choose to a hospice, he/she will also be supported by a legion of volunteers, carefully selected and trained to offer spiritual, practical and emotional support to the patients and their families with serious illnesses. Volunteers may also at times build a strong relationship with the family and be available at the other end of the helpline or call-in to visit the patients in their homes.
At any time, the patient can choose to leave its home to integrate another facility like the hospital for instance.
Many hospitals train dedicated medical staff in palliative care. In Andalusia, hospital staff and private centres follow the “Dignified Death Law” voted by the Junta de Andalucia in 2009 and which regulates the rights of patients. Being such a central point in Andalusia where our not-for-profit is based, we will dedicate our next editorial to this law.
10 common myths (source http://www.virtualhospice.ca)
- Myth: Palliative care hastens death.
Fact: Palliative care provides comfort and the best quality of life from diagnosis of an advanced illness until end of life.
- Myth: Palliative care is only for people dying of cancer.
Fact: Palliative care can benefit patients and their families from the time of diagnosis of any illness that may shorten life.
- Myth: People in palliative care who stop eating die of starvation.
Fact: People with advanced illnesses don’t experience hunger or thirst as healthy people do. People who stop eating die of their illness, not starvation.
- Myth: Palliative care is only provided in a hospital.
Fact: Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice or hospital.
- Myth: We need to protect children from being exposed to death and dying.
Fact: Allowing children to talk about death and dying can help them develop healthy attitudes that can benefit them as adults. Like adults, children also need time to say goodbye to people who are important to them.
- Myth: Pain is a part of dying.
Fact: Pain is not always a part of dying. If pain is experienced near end of life, there are many ways it can be alleviated.
- Myth: Taking pain medications in palliative care leads to addiction.
Fact: Keeping people comfortable often requires increased doses of pain medication. This is a result of tolerance to medication as the body adjusts, not addiction.
- Myth: Morphine is administered to hasten death.
Fact: Appropriate doses of morphine keep patients comfortable but do not hasten death.
- Myth: Palliative care means my doctor has given up and there is no hope for me.
Fact: Palliative care ensures the best quality of life for those who have been diagnosed with an advanced illness. Hope becomes less about cure and more about living life as fully as possible.
- Myth: I’ve let my family member down because he/she didn’t die at home.
Fact: Sometimes the needs of the patient exceed what can be provided at home despite best efforts. Ensuring that the best care is delivered, regardless of setting, is not a failure.
Acompalia supports terminally ill patients and their families in Granada and along the Costa Tropical, southern Spain. Our Acompanions provide trained, bilingual volunteers to go with patients and family members to medical appointments. Our helpline provides practical support and a sympathetic ear for patients and their families when they need it most. When you need grief support, Acompalia is at your side from the early stages until the very end; it keeps you company and gives you helpful advice in these difficult times. As for legal advice, you need to be prepared for the end of life. Acompalia can help make sure that you get appropriate legal advice so that all the formalities are properly taken care of, and that your loved one’s wishes are respected.
While I am privileged to have been elected Acompalia president in April 2017, Acompalia would not be the fantastic not-for-profit it is without its legion of volunteers, members and followers. However, we need your support more than ever as, at present, we rely solely on donations to offer for free our services. This is why today, I am thanking you warmly for your continuous support and dedication but I am also asking you to keep on donating to help us reach and surpass our target of 15,000€ and to please support us further by becoming a member for only 15€ a year.
Thank you and Viva la vida!
President to Acompalia