Palliative care: definition, approach, who decides?

Palliative care: definition, approach, who decides?

Palliative care is care intended to improve the quality of life of patients. They are carried out in conventional hospital services, or in USP (palliative care units) or in the home setting, with or without HAD (hospitalization at home), depending on the wishes and clinical condition of the patient. A mobile palliative care team can also travel to different hospital departments, medico-social establishments or at home.

Definition of palliative treatments, what exactly is it?

THE palliative care are delivered in a global approach to the patient. These are care and services intended for patients with serious, chronic, progressive or incurable illnesses. “Palliative care is active, very active even”, explains Professor Elise Perceau-Chambard, head of the palliative care department at Lyon University Hospital. “We have a goal, that of improving the patient's quality of life. We respond to his needs on a biomedical level and in terms of the somatic symptoms he presents: dyspnea (breathing difficulty), digestive or appetite disorders. We act to improve their psyche, their anxieties or their depressive state. In summary, we take care of all the symptoms that the patient presents in connection with their illness or the treatment of this illness.

In case of progressive metastatic cancer for example, monitoring the tolerance of treatment, with minimal impact on quality of life, is one of the missions of the palliative care team.

Unreasonable obstinacy (formerly called “therapeutic persistence”) is not one of the care provided to the sick.

In palliative care, caregivers ensure that the patient feels the best in their mental, social and relational life, with the lowest possible impact of the illness. Spiritual life can be developed or nourished.

THE relatives are fully integrated into the patient's personalized care plan. Those close to you are supported as best as possible throughout the course of the patient's illness.

“USpecial attention is also given to caregivers and all care teams. Each treatment is personalized and very individualized according to the patient, like clinical medical lace. The support of caregivers and volunteers is important”.

Did you know ?

The right to access to palliative care is enshrined in law (Public Health Code, article L1110-5). The provision of palliative care prevents and relieves suffering, whether physical, psychological or psychosocial.

Why palliative care?

Les cancers

Generally, these are people with cancer who require palliative care:

  • In case of cancer at an advanced stage;
  • In the presence of metastases;
  • In the event of significant loco-regional development;
  • In the case of rapidly progressing cancers;
  • In the event of an illness endangering the patient's vital prognosis.

Palliative care also takes care of people suffering from illnesses for which no cure is possible, such as metastatic pancreatic cancer for example, with an unfavorable prognosis.

Incurable neurodegenerative diseases

Some patients in palliative care suffer from neurodegenerative pathologies, such as amyotrophic lateral sclerosis (also called Charcot disease) or multiple sclerosis.

Organic dysfunction

Patients suffering from several progressive pathologies, particularly in old age, can be admitted to palliative care. It may involve organ failure, failure of the normal functioning of the heart or kidneys, with an unfavorable and rapid evolution.

Where is palliative care provided?

As Professor Elise Perceau-Chambard explains to us, the medical expertise team thinks about and shapes an individualized project with each patient. The project depends on several factors, including the patient's wishes, their physical capabilities, and whether they feel safe. “Our goal is to make daily life easier and anticipate acute events, such as painful peaks, dyspnea, hemorrhagic symptoms or worsening of symptoms.,” continues the doctor.

In services or palliative care units (USP)

There are USP or palliative care units, which are hospital care services to alleviate crisis situations. THE USP are not living spaces, unlike other health establishments. Those are places of care.

Hospitalization at home (HAD)

Sometimes, patients' wish is to stay home or return home: l’HAD (hospitalization at home) can then be offered. “The care and life project is then built around a return home with a home hospitalization service (HAD) or in partnership with palliative care networks and the treating physician.” The implementation of this project depends on the capacities of the families, the illness and the care it requires, the abilities of the sick person to be able to carry out daily activities, etc.

The mobile palliative care team

THE palliative care can exist in any hospital department or health establishment and even in nursing homes, thanks to a mobile palliative care team (EMSP).

What is the maximum duration of palliative care?

There is no maximum duration of palliative care. “A patient in palliative care can stay there for several years, for 7 or 8 years, or even until their death. We never know how long a sick person remains in palliative care. Our job is to ensure that the patient takes ownership of the time that remains, focusing on the quality of this remaining time, rather than the quantity, which always remains an unknown.”

Who requests the implementation of palliative care: when does it start, who decides?

It's the referring doctor which proposes the admission of a patient to palliative care. Sometimes, the doctor, like the attending physician, can consult the palliative care teams, for analgesic treatment for example or for the management of symptoms that bother the patient in their daily life. “More and more often, a doctor can request palliative care services to anticipate the negative course of an illness. Finally, the patient can also contact their attending physician or oncologist..

Support in palliative care: who participates in palliative care? Which professionals?

The palliative care team is multidisciplinary and specialized, with specific skills. The coordination of numerous professionals is very important for the realization of the patient's project:

  • Doctors ;
  • Nurses;
  • Psychologists;
  • Social workers;
  • Dietitians;
  • Psychomotor therapists;
  • Supporting volunteer associations, etc.

“In non-specialized structures, the challenge is to train caregivers, because palliative care patients can be cared for anywhere (health establishment, hospital, EHPAD), including at home. It is therefore a patient-centered teamwork” continues Dr. Elise Perceau-Chambard.

What is the life expectancy in palliative care?

“Life expectancy in palliative care is meaningless, each illness, each patient and each course being different. On the other hand, we encounter patients at an early stage of the disease as well as patients who have received a diagnosis that is already very advanced.”

What help for loved ones?

With the patient's agreement, when he starts palliative care, the psychologist meets his family. The psychologist can work as a mobile team, monitoring patients in nursing homes or at home. The consultation between relatives and the psychologist serves to take stock of the medical situation, the concerns and the solutions that can be provided. The idea is also to work together on a return home project.

“At Lyon University Hospital for example, after the death of the patient, we offer bereavement groups, in which we invite bereaved families to participate. These groups are led by a nurse and a psychologist, to support the loved ones.”

How to find a palliative care facility?

Depending on the project, the doctor can refer the patient to the local palliative care structure. A mobile palliative care team can come for an opinion or a consultation. “At the Lyon University Hospital, we opened a palliative care day hospital to welcome patients for an assessment of their pain or to improve their treatment. This device allows you to make contact and provide personalized care with a doctor, a physiotherapist or a psychomotor therapist. Often, patients feel reassured about the existence of these structures: they can contact us in case of difficulties, they know that they are not alone.

What future in palliative care?

A return home is possible after being hospitalized in the USP. “It is also one of the life projects of many patients. USPs are more intended for managing a crisis, such as very painful symptoms or an exhausted family. Nearly half of the patients admitted here return to follow-up care or rehabilitation to continue their lives.”

In palliative care, teams try to have a very personalized approach to care, the role of which is to offer the sick person a better quality of life. In palliative treatment, the goal is to best meet the needs of patients, who are very vulnerable. The teams are very present and committed to deploying all possible means of assistance.