What is inpatient palliative care. Palliative care for cancer patients

Palliative care is a special type of medical care that is needed for patients with incurable diseases. Patient care includes both medical and psychological support

Palliative care is a special type of medical care that is needed for patients with incurable diseases.

Patient care includes both medical and psychological support.

In this article, we will talk about the current changes in the procedure for providing palliative care to patients in 2019.

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The main thing in the article

Palliative Care Act 2019: New Requirements

Palliative care can improve the quality of life of terminally ill patients. The Ministry of Health has approved a list of diseases in which patients need palliative care.

These include:

• various types of terminal dementia;
• injuries after which patients need constant care;
• oncological diseases in the terminal stage;
• progressive chronic diseases in the terminal stage, etc.

Palliative medical care is free of charge and is included in the program of state guarantees of the Russian Federation.

The palliative care law sets out the basics for the provision of this type of medical services:

1. How and to whom doctors should provide medical care.
2. What violations are unacceptable.
3. How to organize the interaction of different specialists in the provision of palliative care, etc.

In 2019, the law was amended. First of all, the concept of "palliative health care". If earlier it was interpreted exclusively as a complex of medical interventions, then in the new edition the understanding of palliative medicine has expanded.

Now the legislator did not disregard the social nature of palliative care.

↯ How to create an internal quality control system for palliative care
In the recommendation of the System Chief Physician

In particular, in letter No. 10227 / MZ-14 of 25.04.2005, the Ministry of Health and Social Development proposed to include the concept of care in the understanding of palliative medicine.

In the new version of the law, palliative care is not only a complex of medical interventions, but also measures of a psychological nature, patient care.

The goals of these events are named:

• achieve the highest quality of life for the patient;
• to adapt the patient as much as possible to the situation related to his state of health.

Working with a patient includes:

1. Dynamic monitoring of the patient's health.
2. Patient education and counseling.
3. Fulfillment of prescriptions of the doctor and consultants.
4. Helping a doctor perform medical procedures.

Free pain relief at home

Medical facilities providing palliative care should provide their patients with a set of free drugs from the VED list.

The new requirement is that patients are provided with free drugs not only when they are admitted to a hospital, but also when visiting a patient at home, during his treatment in a day hospital.

The rules for providing palliative care for cancer patients have been updated. In particular, the Ministry of Health established the patient's right to receive strong narcotic drugs. These drugs are necessary to relieve severe painful conditions.

Therefore, the medical institution should purchase such drugs in sufficient quantities and use them:

• when treating a patient in a hospital, including daytime;
• when observing a patient on an outpatient basis;
• when visiting a patient at home.

Note that in accordance with the Federal Law-3 "On narcotic and psychotropic drugs", the following requirements are established for medical institutions:

• organization of storage sites for NS and PV;
• providing the necessary storage conditions;
• keeping records on the intake and consumption of drugs;
• readiness for inspections by the Ministry of Internal Affairs;
• a special license is required for the purchase and use of drugs.

Palliative care without patient consent

In the new version of the law, palliative care is possible without the consent of the patient. The decision is made by the medical commission if the following conditions are met:

• the patient's serious condition does not allow him to express his will;
• the patient has no family and legal representatives.

If a commission decision is not possible, a decision can be made by a council, which may include the doctor on duty and attending physician, a palliative care doctor. The decision of the specialists is reflected in the patient's medical record.

The head of the department or the head physician, the patient or his representatives are notified of the decision.

Healthcare managers must explain new rules to healthcare professionals and approve internal order providing palliative care without the consent of the patient.

Home ventilation for palliative care

Another change that has affected palliative care is providing patients with home use of the medical devices they need to maintain vital body functions.

The list of medical devices that can be provided to patients is approved by the Ministry of Health.

The center or department of palliative care should organize the continuity of this type of care in a hospital and an outpatient clinic. For example, if a patient needs mechanical ventilation at home, the doctor gives him the appropriate recommendations upon discharge.

For this, the position of anesthesiologist-resuscitator is introduced into the staff of the visiting field service. The service is equipped with a portable oxygen concentrator, a cough and a portable ventilator.

The number of such devices depends on the number of patients with appropriate indications.

Recall that in 2018, the Ministry of Health made these changes to the procedures for providing palliative care to children and adults.

In connection with the changes, the Ministry of Health is authorized to add new medical devices to the list for providing patients at home. In this regard, palliative departments and clinics need to purchase these medical devices and transfer them for use to patients who need them.

Psychological support and palliative care

Previously, palliative care consisted mainly of a range of medical interventions. Psychological support and care was also assumed, but was not officially enshrined in regulations.

The situation has changed. Now the law specifies with whom medical institutions interact when providing palliative medical care to the population.

Participates in the provision of palliative medical services to children:

• the organization's medical personnel who have undergone special training in the provision of palliative services to children (pediatric oncologists, district pediatricians, neurologists, family doctors);
• nursing staff of the organization trained in providing this type of assistance to children.

The decision on the need for a minor patient in the provision of palliative care is made by a commission.

The commission includes:

• chief physician of a medical facility;
• the head of the department in which the child is being treated;
• the patient's attending physician.

Prescribing potent narcotic and psychotropic drugs to a child follows the rules established by order of the Ministry of Health of the Russian Federation No. 1175n dated 20.12.2012.

In certain cases, when the child is discharged from the hospital, the legal representatives of the child may be issued a prescription for receiving medications for follow-up treatment on an outpatient basis. The supply of drugs is up to 5 days of admission.

Palliative care for children has an important feature - any medical procedures that may cause pain to the patient must be carried out with high-quality pain relief.

When a child reaches the age of majority, he is transferred to observation in a medical facility that provides palliative medical services to the adult population.

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Professional standard of a palliative care doctor

A palliative care doctor is a specialist in the provision of this type of medical services. Professional professional standard approved by order Ministry of Labor of the Russian Federation No. 409n dated 22.06.2018.

The document lists the requirements for a specialist, including the necessary skills and abilities of a doctor, the level of his professional training.

The purpose of rendering this profession is indicated - to diagnose manifestations of serious diseases in terminally ill patients, to alleviate pain in order to improve their quality of life.

Special conditions for admission to the position of a doctor in palliative medicine are:

1. The specialist has a certificate of accreditation / certification for the provision of palliative medical care to adults or children.
2. The specialist receives additional professional education in the direction.

To provide this type of medical services, a palliative care doctor is endowed with the following functions:

• provision of emergency forms of assistance to patients;
• medical examination of patients to determine the strategy of pain management in patients, as well as other severe symptoms illness;
• medical examinations;
• determining the patient's treatment plan, monitoring the effectiveness and safety of therapy;
• organizing the work of subordinate nurses involved in palliative care;
• filling out the necessary medical documentation;
• analysis of medical and statistical information in the area of \u200b\u200bactivity.

What is palliative care.
The term “palliative” comes from the Latin “pallium” which means “mask” or “cloak”. This defines what palliative care essentially is: smoothing - hiding the manifestations of an incurable disease and / or providing a cloak to protect those left "in the cold and unprotected."
Whereas previously palliative care was considered symptomatic treatment patients with malignant neoplasms, now this concept applies to patients with any incurable chronic diseases in the terminal stage of development, among whom, of course, the bulk of them are cancer patients.

Currently, palliative care is a direction of medical and social activity, the goal of which is to improve the quality of life of incurable patients and their families by preventing and alleviating their suffering, through early detection, careful assessment and relief of pain and other symptoms - physical, psychological and spiritual.
According to the definition, palliative care:

Goals and objectives of palliative care:
1. Adequate pain relief and relief of other physical symptoms.
2. Psychological support of the patient and caring relatives.
3. Developing an attitude towards death as a normal stage in a person's path.
4. Satisfaction of the spiritual needs of the patient and those close to him.
5. Solving social and legal issues.
6. Solution of issues of medical bioethics.

Can be distinguished three main groups of patients requiring specialized palliative care at the end of life:
patients with stage 4 malignant neoplasms;
end-stage AIDS patients;
patients with non-oncological chronic progressive diseases in the terminal stage of development (stage of decompensation of the cardiac, pulmonary, hepatic and renal failure, multiple sclerosis, severe consequences of disorders of cerebral circulation, etc.).
According to palliative care specialists, the selection criteria are:
life expectancy no more than 3-6 months;
the obviousness of the fact that subsequent attempts at treatment are inappropriate (including the firm belief of specialists in the correctness of the diagnosis);
the presence of complaints and symptoms (discomfort) in the patient, which require special knowledge and skills to carry out symptomatic therapy and care.

Inpatient palliative care institutions are hospices, palliative care departments (wards) located on the basis of general hospitals, oncological dispensaries, as well as inpatient institutions. social protection... Home help is carried out by specialists from a field service, organized as an independent structure or being structural unit stationary institution.
The organization of palliative care can vary. Given the fact that most patients would like to spend the rest of their lives and die at home, home care would be most appropriate.
To meet the patient's needs for comprehensive care and different types assistance requires the involvement of various specialists, both medical and non-medical specialties. Therefore, a hospice team or staff usually consists of doctors, trained nurses, a psychologist, a social worker and a priest. Other professionals are called in to provide assistance as needed. The help of relatives and volunteers is also used.

A somewhat unusual word "palliative" is derived from the Latin "pallium", that is, "veil", "cloak". Philosophically, this concept implies protection from adverse influences and ensuring comfort. In reality, palliative care is aimed at creating such conditions for seriously ill people, in which they can more easily tolerate their situation. Palliative care is a system of measures aimed at improving the quality of life of patients with incurable, severe, life-threatening diseases. It consists in the use of drugs and techniques that relieve pain syndromes or minimize the degree of their manifestation.

The essence of palliative care

We all know that we will die someday, but we really begin to realize the inevitability of death only on its threshold, for example, when there is no longer any hope of recovery from a serious illness. For many, the sensation of impending demise is no less terrible than physical suffering. Almost always, along with the dying, their loved ones endure unbearable mental anguish. Palliative care is precisely aimed at alleviating the fate of the patient and supporting his relatives through the use of a variety of methods of influence: drugs, moral support, conversations, organizing activities that raise vitality, solving social issues, etc. suffering cannot be completely detached. Doctors, nurses, nurses who work with terminally ill patients must be able not only to carry out procedures that relieve pain, but also to have a beneficial effect on the patient with their human attitude, treatment, and the right words. That is, a dying person should not feel like a burden, superfluous, no longer needed. Until the very end, he should feel the value of himself as a person and be able to self-realization to the extent that he succeeds.

The procedure for the provision of palliative care

In Russia, order No. 187n was issued, approved on April 14, 2015, which says about the procedure for the provision of palliative medical care. A separate paragraph of this order highlighted the categories of people who can count on it. Diseases and conditions for which palliative care is provided are as follows:

• oncology;
• end-stage chronic diseases;
• injuries with irreversible consequences, in which the patient needs constant medical care;
• degenerative diseases nervous system in the final stages;
• terminal dementia (eg, Alzheimer's disease);
• severe and irreversible disorders of cerebral circulation.

There is an order No. 610 of 17.09.2007 on the specifics of helping people with AIDS.

Each of these diseases has its own characteristics of the course and requires an individual approach to therapy and patient care.

Palliative care for cancer patients

Logically, the natural process of death should concern people in old age. But, unfortunately, there are a number of incurable diseases that affect both the elderly and the young, for example, cancer. About 10 million earthlings fall ill with cancer every year, not counting the large number of relapses. It is for cancer patients who the last stages diseases palliative care is provided in the first place. It can be carried out separately or in conjunction with radiation and chemotherapy and consists in relieving the patient's pain with potent drugs.

According to statistics, cancer mainly affects those who have crossed the age limit of 55 years (more than 70% of cases). In old age, as a rule, patients are diagnosed with other ailments (cardiological, vascular and many others) that aggravate their situation. The organization of palliative care should be carried out taking into account the aggravating factors of the underlying disease. At the same time, it is necessary to use all methods available to science to alleviate the patient's situation, regardless of whether there is a chance for recovery.

Palliative operations

The idea of \u200b\u200bproviding palliative care for cancer, in addition to the use of "Morphine", "Buprenorphine" and other narcotic analgesics, is the so-called palliative operations. They involve surgical intervention in cases where the doctor knows in advance that the patient will not recover, but his condition will improve for a short or long period. Depending on the location of the tumor and its type (disintegrating, bleeding, metastatic), palliative operations are divided into two categories. The first is urgent - when the patient has an immediate threat to life in the very near future. So, for cancer of the larynx, a tracheostomy is installed during surgery, for cancer of the esophagus, a gastrostomy is sewn in. In these cases, the tumor is not removed, but conditions are created under which it will harm the patient's life less. As a result, death can be postponed indefinitely, sometimes by several years.

Help for AIDS patients

The peculiarities of this disease bring great suffering to patients. Often, people living with HIV experience emotional, psychological and social problems as much as physical suffering. Caring staff are also subjected to psychological pressure due to the fear of infection, although this happens very rarely in everyday life. AIDS is a progressive and ultimately fatal disease, but unlike cancer, there are periods of remission and exacerbations associated with concomitant infectious diseases... Therefore, in AIDS, palliative care is both symptomatic therapy according to indications and active methods of treatment that relieve pain, relieve the patient's condition with fever, skin and brain lesions, and other painful conditions. If cancer patients are not informed of their diagnosis, then HIV-infected are notified immediately. Therefore, it is highly desirable that they take part in the choice of treatment methods and be informed about the results with which it goes.

Help with other diseases

There are many severe ailments. For example, a stroke leads to disability and death in about 80-85% of cases. For people who have undergone it, palliative care consists in performing the necessary therapeutic procedures that support and, as far as possible, restore vital functions of the body (for example, the ability to walk). Daily care of such a patient includes placing a catheter to drain urine, preventing pressure ulcers, feeding through a nasopharyngeal tube or using an endoscopic gastrostomy, exercises to strengthen the patient's muscles, and others.

All more people on the planet are faced with Alzheimer's disease, in which the work of the brain is disrupted, and with it all organs and systems of the body, including mental, speech, motor, immunoprotective functions. Palliative care in this case consists in maintaining the body with medication, as well as in creating conditions for the patient that provide (as much as possible) his normal life.

Ambulatory treatment

The organization of the provision of palliative care includes outpatient and inpatient treatment. On an outpatient basis, people can visit medical institutions, but more often the doctors themselves go home to the patients (mainly for analgesic manipulations). This service should be provided free of charge. In addition to medical procedures, outpatient care consists of teaching relatives how to care for seriously ill patients at home, which includes water procedures (washing, washing), nutrition (oral, enteral by tube or parenteral, by administration nutrients injections), removal of gases and waste products with the help of catheters, gas outlet tubes, prevention of pressure ulcers and much more. Also, outpatient care includes the issuance of prescriptions for narcotic and psychotropic drugs, referral of a patient to a hospital, psychological and social assistance to his relatives.

Day hospital

Order No. 187n, which regulates the procedure for providing palliative care to the adult population, separately highlights the possibility of treating patients in day hospitals. This is done in cases where there is no need to conduct round-the-clock monitoring of the patient, but it is required to use hardware and other specific methods of treatment, for example, put droppers, use laser or radiation therapy. Day hospitals for patients who have the opportunity to visit them are an excellent option, since with such treatment a person does not feel cut off from his family and at the same time receives all the necessary procedures that cannot be carried out at home.

Hospices

This is the name of the institutions where palliative care is provided to incurable patients in the terminal stage of the disease. The word “hospice” is derived from the Latin “hospitium”, which means “hospitality”. This is the essence of these institutions, that is, here not only, as in hospitals, they carry out treatment, but also create the most comfortable living conditions for patients. They get to hospices mainly shortly before death, when there is no longer any possibility at home to stop severe pain and provide care. Most hospice patients cannot eat orally, breathe on their own, or fulfill their physiological needs without specific help, but despite this, they still remain individuals, and the attitude towards them should be appropriate. In addition to the functions of a hospital, hospices must necessarily perform ambulatory treatment severe patients, and also work as day hospitals.

Staff

Palliative care is provided not only by medical workers, but also by volunteers, religious leaders, and public organizations. Not everyone can work with dying people. For example, nurse palliative care should not only have professional skills in performing procedures (injections, droppers, installing catheters, connecting the patient to devices that support vital body functions), but also have such qualities as compassion, philanthropy, be able to be a psychologist, helping patients to calmly perceive them position and near death. Squeamish, highly impressionable and indifferent to the grief of others are categorically forbidden to work with seriously ill people. It is also strictly forbidden to hasten the death of the patient in order to rid him of his torment.

It should be understood that palliative care providers themselves have a negative impact on their occupation. Constant presence near dying people often leads to depression, nervous breakdowns, or develops indifference to other people's pain, which is a kind of psychological defense.

That is why it is invaluable to conduct regular trainings, seminars, and experience exchange meetings with all those involved in palliative care.

Palliative care is an active, all-encompassing care for a patient with a disease that cannot be cured. The main purpose of palliative care is to relieve pain and other symptoms, as well as to solve social, psychological and spiritual problems. The process of providing palliative care involves the patient himself, his family and the public. In a sense, the basic concept of palliative care is to meet the needs of the patient wherever he receives such care, at home or in the hospital. Palliative care supports life and forms an attitude towards death as a natural process, has no intention of either delaying or bringing death closer, its task is to ensure, as far as possible, best quality the patient's life.

The need to provide PMP arises at the last terminal stage of the course of the disease, when the patient, due to a severe physical condition or the nature of the disease, needs effective and timely relief from pain and other manifestations, and maintain an acceptable quality of life. Such patients include patients with incurable progressive diseases and conditions, which include:

• various forms of malignant neoplasms;
• chronic diseases in the terminal stage of development;
• heavy irreversible consequences cerebral circulation disorders, injuries;
• various forms of dementia (acquired dementia) in the terminal stage;
• degenerative diseases of the nervous system at a late stage of development;
• a number of other diseases and disorders indicated in the order of the Ministry of Health No. 187n.

The demand for PHC is steadily increasing due to demographic trends and due to an increase in the number of patients who manage to provide treatment and prolong life with other types of medical care. Maintaining the best possible quality of life for the patient is achieved by:

• prescribing pain relievers, treating symptoms and preventing their occurrence;
• providing psychological and social assistance to patients and their loved ones;
• providing patient care.

Depending on the severity of the patient's condition, the wishes of the patient and his family, household and a number of other factors, PMP can appear in various conditions:

• on an outpatient basis - in PMP offices (a patient's visit to a doctor, a relative's visit to a doctor, a doctor's visit to a patient);
• day hospital in the PMP center;
• home inpatient service - outreach service of hospices, center;
• hospital - in the hospice, center, palliative care departments in the City Clinical Hospital;
• in social institutions - a psycho-neurological boarding school, a nursing home or a social boarding house.

For the organization of outpatient admission of patients in medical organizations, palliative care rooms are created, in which a doctor takes a primary care. PHC rooms provide care to those patients who are not yet attached to a hospice / center. The doctor of the PMP office, in addition to receiving the patient and relatives directly in the office, can make home visits to the patient, but this is an exceptional case. Today in Moscow there are about 50 offices. In hospitals, primary care departments with a capacity of 10 - 30 beds are organized. The number of branches in Moscow is 19, of which 5 are located in the city center.

PHC at home is provided by field services and by organizing the necessary conditions to maintain the patient's quality of life at home.

If it is impossible to create conditions at home or at the joint request of the patient and relatives, the patient can be referred to a hospice - a specialized institution for the provision of primary care or to the primary care department of a medical organization.

There are 8 hospices in Moscow with a capacity of 30 beds each. The network of hospices is complemented by the VF Voino-Yasenetsky Scientific and Practical Center for Specialized Medical Care for Children of the Moscow City Health Department (30 beds) and the Moscow City Health Department Center for Palliative Medicine (200 beds).

Palliative medicine is helping people whose disease cannot be cured, with the aim of alleviating their suffering and providing them with support during difficult times.

What is palliative medicine for?

To help people suffering from:

■ HIV infection.

■ Progressive neurological diseases.

■ Other life-threatening diseases.

A holistic approach to the problem:

■ Physical aspects.

■ Psychological aspects.

■ Social aspects.

■ Spiritual aspects.

Palliative medicine is helping not only the dying, but also the living.

Palliative medicine exists alongside other programs and within other programs.

Palliative medicine does not know the words "there is nothing more we can do".

Chapter 1: What is Palliative Medicine?

WHO definition of palliative medicine

Palliative medicine is an approach aimed at improving the quality of life of patients and their families facing life-threatening illness by preventing and alleviating suffering through the early detection, accurate assessment and treatment of pain and other physical, mental, psychosocial and spiritual problems.

character. http://www.who.int/cancer/paNiative/definition

What is palliative medicine?

What do we do when the sick don't get better? All over the world, even in countries with a large number of health workers, sufficient medicines and the most modern equipment, there are patients who cannot be cured. Is there any way you can help these people? The answer to this question is what palliative medicine is looking for. The World Health Organization (WHO) has formulated a definition of palliative medicine (see below). This may be a new term for many of us, but it simply means caring for people with terminal illnesses, alleviating their suffering and supporting them during difficult times. Most of us as health workers show this concern at work and in our daily life, but do not know how to cope with many problems, and therefore feel helpless and discouraged. This guide has been designed to help make our care more effective by learning simple skills and putting together basic information to use for the benefit of patients with incurable diseases.

Why do we need palliative medicine?

Modern medicine is aimed primarily at treating illness with medication, surgical interventions and other treatments. After realizing that prevention is more effective than cure, we began to take measures to protect public health, vaccinations and health education. Most health services are designed to treat and prevent disease. However, while working in these services, many of us have discovered that there is a serious need that is being overlooked, namely, continued care for those who are unable to recover.

The need for palliative medicine is huge

■ In 2007, more than 7 million people died from cancer. 1 .

■ In 2007, two million people died from AIDS. 2.

■ More than 70% of cancer or AIDS patients experience severe pain. 3 .

■ Thirty-three million people worldwide are currently living with HIV.

■ It is estimated that basic palliative medicine can help 100 million people around the world. 4 .

The development of palliative medicine and the modern hospice movement began in England in the 1960s with the care of cancer patients. However, the need for palliative care is even greater in resource-limited settings, as cure is often impossible due to late doctor visits and disabilities treatment. The HIV epidemic has drawn attention to the need for palliative medicine. Even where antiretroviral therapy (ART) is available, patients still suffer from severe symptoms. The knowledge that there are many sick people they cannot help can be demoralizing for health care workers.

Palliative medicine benefits people with various diseases... She can help every patient with a life-threatening illness - young or old, rich or poor, in the hospital or at home.

1. American Cancer Society (ACS). Global cancer facts and figures 2007. Atlanta: ACS; 2007.

2. UNAIDS / World Health Organization (WHO). AIDS epidemic update. Geneva: UNAIDS / WHO; December 2007.

3. National Hospice and Palliative Care Associations "2nd global summit. 2005. Korea declaration on hospice and palliative care. Available from: http://www.worldday.org/documents/Korea_Declaration.doc.

4. StjernswArd J and Clark D. Palliative medicine - a global perspective. In Doyle D, Hanks G, Cherny N and Calman K (eds). Oxford textbook of palliative medicine (3rd ed). Oxford: Oxford University Press; 2004.

Palliative medicine can

help with:

■ HIV infection.

■ Severe renal or heart failure.

■ Terminal stage of pulmonary disease.

■ Progressive neurological diseases.

■ Other life-threatening diseases.

A holistic approach involves focusing on four groups of issues:

■ Physical - Symptoms (complaints of discomfort) such as pain, cough, fatigue, fever.

■ Psychological - anxiety, fear, sadness, anger.

■ Social - family needs, food, job, housing and relationship problems.

■ Spiritual - questions about the meaning of life and death, the need for peace (harmony and harmony).

What is special about palliative medicine?

Health care professionals tend to focus on physical issues - illness and treatment - while palliative medicine recognizes that a person is not just a body. Our intellect, our pep, our senses are all part of our personality, as are the family and communities to which we belong. Therefore, the difficulties that the patient and his family face are not only physical, but, possibly, psychological, social and spiritual problems. Sometimes, difficulties in one area can exacerbate other problems (for example, pain is often worse when the patient is anxious or depressed). Only by addressing all the components of the personality, we can help a person. In other words, we are talking about holistic assistance.

Imagine a young woman, mother of three. She lives in a provincial town. Her husband died six months ago, and neighbors say he had AIDS. And now she falls ill, loses weight, and she is afraid that she, too, might die. She recently developed an ulcerated swelling in her leg that makes her sleep deprived. On some days she can barely get out of bed to take care of the children, and her parents live far from her, in the village. The landlord demands rent, but the family's income has plummeted since death. Neighbors whisper that her family is damaged (curse), and she begins to think that perhaps this is the case - after all, she prayed to God to help her, but there was no help.

What would you think if you were this woman?

We can assume that illness is far from its only problem. Perhaps her biggest concern is how to feed her family or what will happen to her children if she dies. She lacks financial resources, is isolated and feels that God has left her. Palliative medicine isn't just about disease. She draws attention to all the issues of greatest concern to patients. In the following chapters, we will look at ways to provide palliative care.

Palliative medicine cares about life, not just dying help.

Many people think that palliative medicine is about helping patients in the last few days of their lives, but in reality it is about alleviating suffering and improving the quality of life since the discovery of an incurable disease. The goal of palliative medicine is not to lengthen or shorten life, but to improve the quality of life so that the remaining time - be it days, months or years - is as calm and fruitful as possible.

"Fill their days with life, not just make them live longer."

Hospice Nairobi, 1988.

Lady Cicely Saunders, founder of the hospice movement, said:

“You are significant to us by the very fact of your existence. You are important to us until the last moment of your life, and we do our best not only to ensure that you meet death with dignity, but that you live until death. "

Palliative medicine works alongside and with other programs

Palliative medicine is not a substitute for other forms of care. It can be integrated into existing programs and be part of the care provided to every patient with life-threatening diseases.

Many home help programs are very good at supporting patients, such as psychological counseling or a program practical helpbut they are not well suited for helping patients with physical problems such as pain and other distressing symptoms. Sometimes home help workers just don't know what to do.

“The centuries-old traditions have formed the idea that a person should die at home. There was also traditional knowledge about how to care for a person at home. Sadly, these ideas turned out to be wrong. People wanted to die at home, but in most cases they went to die, even though they went home, to a place where no one knew how to care for them, where there was no one to relieve their symptoms. It was very difficult for family members to talk to the dying person about what was happening to him, about what it meant for the family. Much was surrounded by mystery. "

Mark Jacobson, Tanzania

Many inpatient care programs, such as antiretroviral therapy (ART), chemotherapy, or radiation therapy, are good for treating illness, but not very helpful in addressing psychosocial issues such as anxiety, grief, isolation, and stigma.

Palliative care can be integrated into both types of programs to deliver holistic care as a result.

Depending on the specific circumstances of the patients and the severity of the illness, they may need different types help.

By the time a person first learns that his disease is incurable, he can be active, work, do household chores, can undergo treatment, for example, receive ART or chemotherapy. Palliative medicine should start alongside other treatments to provide relief from severe symptoms and side effects, and giving emotional and spiritual support to the patient and his family. Over time, needs will change, for example, additional symptomatic treatment will be required. Some treatments may be canceled because they are not more effective, and a holistic approach is essential. Even after the death of the patient, palliative care can continue in the form of support from family, friends and children during the bereavement period.

Palliative medicine does not know the words "there is nothing more we can do".

Like the woman described above, many patients with life-threatening illnesses have so many problems that medical professionals and caregivers feel confused and helpless. Often patients are sent home, telling them that there is no need to return because "there is nothing more we can do," when it is necessary to focus on what we can do, and not give up, believing that nothing can be done.

■ We cannot heal the incurable, but we can control many of the symptoms that cause suffering.

■ We cannot rid ourselves of the grief of loss, but we can be with those who are grieving and share their grief.

■ We do not have ready-made answers to all, but we can listen to all questions.

“I remember the very first patient that was referred to me when I set up a palliative care unit in an overcrowded and poorly endowed public hospital. I entered a side room children's department and saw a teenage girl lying on a mattress, emaciated, semi-conscious, dying. Her grandmother was sitting in the corner of the room. I wanted to run away - I did not see how I could try to help in this hopeless situation. Yet I decided to think about what can be done, not what cannot be done. And so we taught my grandmother to clean the drying out oral cavity and smeared with gentian dye the viola affected by stomatitis. We found an extra pillow and used one of Grandma's capes to make the bed more comfortable, to give the body a comfortable position. We explained that the girl needed to be turned regularly to prevent pressure ulcers and given a cream to lubricate dry skin. We invited the grandmother to sit next to her granddaughter and encouraged her to talk to the girl, even if she would not answer. These are all small things, but they showed that we do not give up and do not leave them alone. "

Palliative care physician, Malawi

“I once asked a man who knew he was dying what he most expects from those who care for him. He replied: "To see that a person is trying to understand me." Of course, it is impossible to fully understand another person, but I will never forget that he did not ask for it, but only that someone showed a desire to try to understand. "

Lady Cicely Saunders

The very attempt to understand the problems facing the patient, and to think about how to help, shows the person that he is appreciated, that he is worthy of us giving him our time and attention. This is possibly the greatest gift we can give our patients.