Beyond Pain: Why Palliative Care is not the End, but Support
Many people believe that hospices are a place only for the dying, and palliative care means automatic withdrawal from treatment. However, the reality is that it helps not only to alleviate suffering, but also to improve the quality of life at different stages of the disease. We analyze the most common myths together with representatives of charity and doctors in the Izvestia material.
Palliative care and hospice are the same thing — stereotype one
1.5 million adults and 100,000 children need palliative care in Russia every year, according to data provided by the Vera Foundation to Izvestia. She can be at home, in a hospice, in a hospital— anywhere. But international studies show that about 80% of people want to receive palliative care at home, near their loved ones, in a familiar environment. If it is provided efficiently, only 20% need hospital support.
Palliative care is the exclusive right of a person to spend the last days of his life without pain and humiliation, surrounded by loved ones — at home or in a hospice, the Vera Charitable Foundation shared with Izvestia.
— Such assistance includes not only medical, but also social, psychological and spiritual support. A hospice is a medical organization that provides assistance to seriously ill children and adults. In other words, hospice is a part of the palliative care system," Vera said.
Today, palliative care services can come to patients directly at home, and this area is a priority for the Vera Foundation. For example, the foundation plans to direct all funds raised under the Course of Kindness project specifically to the work of such teams from different regions of Russia.
— Palliative care is not about death, but about life with the highest possible quality, despite a serious illness. This is a comprehensive support system focused on a person, their needs and dignity," Anastasia Goltsman, chief physician of the Medscan|Golden Care clinic, emphasized in a conversation with Izvestia.
If we agree to palliative care, it means that doctors will stop treating, is the second stereotype
The Vera Foundation said that when aggressive treatment methods no longer help or are too exhausting, doctors switch to supportive treatment: they remove pain, treat pressure sores, help to cope with shortness of breath, and select nutrition.
— The goal of hospice medicine is not to prolong life at any cost, but to make every day as comfortable as possible. Palliative care specialists work for the sake of quality, not for the sake of life expectancy," the foundation's press service shared.
Anastasia Goltsman noted that many people believe that such care consists solely of pain relief, but the support that patients in need of palliative care receive includes more than just pain management.
"A heart—to—heart conversation, comfortable positioning in bed, and even help in organizing meetings with family or friends are also part of the support that alleviates suffering," the expert added.
They end up in a hospice before they die — the third stereotype
The sooner palliative care is available, the higher the quality of life of a person and his family. According to the Vera Foundation, a person spends as much time in a hospice as is necessary to relieve painful symptoms and alleviate the condition.
— Sometimes the patient feels better and returns home, and the hospice team regularly visits the family. But often it is no longer possible to return — then the patient stays in the hospice for as long as necessary to live the remaining time without pain, in peace and comfortable conditions. Some people live in a hospice for several days, others for months," the experts said.
Hospices are expensive for the rich, too — stereotype four
In Russia, palliative care and stay in state hospices are free of charge, experts from the Vera Charitable Foundation said. This type of support is included in the compulsory medical insurance (CHI) system, and anyone who needs such assistance can receive it regardless of income.
However, in addition to state—owned hospices, there are also private hospices in the country, among the features of which are lower staff workload, a larger list of available services, including non—medical ones, fewer bureaucratic barriers - it is often easier and faster to be admitted to a private hospice.
— Despite the difference in funding, both public and private hospices are united by one idea. They do not compete, but work together in the field of care, helping those who need support during a difficult period," said Anastasia Goltsman.
It is this kind of cooperation, as well as the participation of charitable foundations, patrons and individuals in the development of palliative care, that has shifted Russia from the 3A palliative care level to the 4A level since 2014, which corresponds, according to the World Health Organization, to a high level of integration.
Hospice only for people with cancer is the fifth stereotype
The Vera Charitable Foundation said that the hospice accepts people with any incurable diseases or other late—stage diseases, such as dementia, amyotrophic lateral sclerosis, and organ failure.
"If there are few available places, priority is given to the most serious patients, who often turn out to be people with cancer," the experts emphasized.
Only oncologists work in hospices — the sixth stereotype
Anastasia Goltsman said that patients in need of palliative care are supported not only by medical staff, but also by a multidisciplinary team.
— Many of them work in hospices or palliative care on a voluntary basis. Their common goal is to create a so—called healing environment, which has a beneficial effect on health and well—being," Anastasia Goltsman added.
This team includes not only doctors who have been retrained to work in palliative care, and nursing staff, but also specialists in other fields, such as rehabilitologists, psychologists, and anesthesiologists. In addition, professionals such as medical lawyers and art therapists are involved in the process.
It's better in the family circle than in the hospital, is the seventh stereotype
A person enters a hospice when they cannot receive the necessary care at home, but if care and symptom control are possible at home, palliative care specialists at home will provide it in the right amount, maintaining the patient's quality of life, the Vera Foundation said.
— If a person's condition allows them to receive the help of a team of specialists at home, then staying at home rather than in a medical facility is the best option. But sometimes it is not possible to find the necessary pain relief and provide professional care at home, and then the hospice becomes the last home for a seriously ill person," the experts shared.
It's dreary and scary in a hospice, like in a hospital — stereotype eight
The Vera Charitable Foundation emphasized that hospices can be different: in some cases they may resemble hospitals, in others they do not exist at all, and in others they really look like a home.
— One of the slogans of the Vera Foundation is "Life is for the rest of your life." This means that a hospice can be a place where a person is helped to live the rest of their time with dignity, without pain and fear. The Vera Foundation supports exactly those hospices where there is an individual approach to a person, and relatives can stay around the clock with a loved one. And also, where there is an opportunity to create a cozy and homely atmosphere, " the Vera Foundation shared.
Thus, the fund's coordinators notice the needs of the family — for example, in spiritual or psychological support — and do everything to realize them. And volunteers help people maintain their usual lifestyle as much as possible: go for a walk, listen to music, eat their favorite dishes and celebrate important dates for the family.
If a person does not know where to turn, the Vera Foundation has a 24-hour hotline for terminally ill people (8 (800) 700-84-36), whose operators will help find answers to various questions.
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