Palliative care : what they really are (and what they are not)
📑 Table of contents
- The definition — simple and essential
- Palliative care does not mean that you are going to die tomorrow
- Palliative care is not the abandonment of care
- Who are the palliative care professionals in Nursing home?
- When do palliative care begin?
- What palliative care actually does
- The role of families in palliative care
- The 5 most common misconceptions
- Mobile palliative care teams (EMSP)
- A right, not a favor
“ Palliative care ” — these three words often trigger, in families, a mix of fear and resignation. As if hearing this word meant that all hope has been abandoned, that we have given up, that we let someone die without fighting. This image is profoundly inaccurate — and the damage it causes is real. Families refuse palliative care for fear of “ hastening things ”. Caregivers hesitate to say the word. Residents suffer unnecessarily because the right resources were not mobilized in time.
This guide aims to clarify things, simply, without medical jargon. Palliative care deserves to be known — by families going through the end of life of a loved one, and by the caregivers who accompany them every day.
1. The definition — simple and essential
Palliative care is active care delivered in a holistic approach to a person with a serious, progressive, or terminal illness. Their goal is not to cure — since healing is no longer possible — but to relieve the physical, psychological, social, and spiritual pain of the patient, and to support their loved ones.
The World Health Organization defines palliative care as “ an approach that improves the quality of life of patients and their families facing a life-threatening illness, through the prevention and relief of suffering, by early identification, assessment, and treatment of pain and other physical, psychological, and spiritual problems ”.
What is important in this definition : palliative care begins long before death. They can be implemented months, sometimes years before death. They do not mean the cessation of all treatments — they mean a change of priority : from healing to comfort, dignity, and quality of life.
A useful image for families: imagine two teams working in parallel. One seeks to treat the disease. The other seeks to relieve the person. For a long time, both can coexist. As the disease progresses and curative treatments become less effective or more burdensome than beneficial, the second team gradually takes more space. Palliative care is this second team — which has always been there, and which becomes central when the time comes.
2. Palliative care does not mean that you will die tomorrow
This is probably the most painful misunderstanding. When a doctor suggests "switching to palliative care" to a family, they often hear: "your loved one is going to die very soon." That is not what it means.
Palliative care can accompany a person for several months, even several years. A person with a progressive neurological disease like ALS, stabilized metastatic cancer, or advanced dementia can benefit from palliative care long before their death — and this period can be a time of real quality of life, of presence to oneself and to others, of precious moments with loved ones.
What palliative care means is that the primary goal is now comfort and quality of life — not prolonging life at all costs. This transition is often experienced, retrospectively, as a relief by families who have gone through it. But it takes time to be accepted, and compassionate support to be understood.
3. Palliative care is not the abandonment of treatment
Another common fear: "if we switch to palliative care, we will stop taking care of my loved one." Again, this is a mistake. Palliative care is not the absence of treatment — it is different care, focused on relief.
In palliative care, we continue to treat infections if they cause discomfort. We continue to manage skin issues, oral care, nursing care. We continue to assess and treat pain — often with more attention and resources than before. We stop examinations, assessments, hospitalizations that no longer bring benefit to the resident. We stop treatments whose side effects are heavier than the benefits. This selection is not abandonment — it is a form of therapeutic wisdom that puts the person at the center.
Isabelle, whose mother passed away in a Nursing home two years ago: “When the doctor told us he was suggesting switching to palliative care, my brother and I thought they would stop all medications, that they would just let her go. It took me time to understand that it was the opposite. My mother received more attention, more visits from the nurse, more comfort care than during the entire period before. She did not suffer. She left peacefully.”
Clearly explain what changes and what does not change when entering palliative care. Name the care that continues. Reassure that attention to the resident does not diminish — it transforms. This early conversation avoids most misunderstandings.
4. Who are the palliative care professionals in Nursing homes?
Palliative care in Nursing homes is not the responsibility of a single specialized professional. It involves the entire team — each according to their role and training.
The coordinating doctor assesses the resident's condition, decides on palliative direction, prescribes pain relief and sedative treatments, and coordinates the care plan with other professionals. The nurse assesses pain daily, administers treatments, monitors clinical signs, and informs families. The nursing assistant provides comfort care, physical presence, quality touch, and relational continuity — a role often underestimated but absolutely central.
The psychologist, when present, supports the resident in their fears, the family in their anticipatory grief, and the caregivers in their compassion fatigue. The chaplain or spiritual companion may be called upon according to the resident's beliefs. And the mobile palliative care teams (EMSP) — specialized external professionals — can intervene to support the internal team for the most complex situations.
5. When do palliative care begin?
One of the most common mistakes in Nursing homes is waiting too long before activating palliative care. They wait for the resident to be “truly dying,” while palliative care is much more effective — and much gentler — when implemented early in the progression of the disease.
Palliative care can be initiated as soon as a disease is recognized as incurable and progressively evolving — without needing to wait for the last days. In Nursing homes, this often means: during advanced dementia with loss of major functional capacities, during metastatic cancer, during severe heart or kidney failure refractory to treatments, or during extreme frailty in a very elderly resident whose condition is gradually deteriorating.
💡 The practical guideline. A useful question to initiate palliative reflection: “Would you be surprised if this resident died in the next 12 months?” This simple question, known as the “surprise question,” is a validated clinical tool to identify residents who could benefit from an early palliative approach. If the answer is no — if the team would not be surprised — it is time to initiate the conversation about palliative care with the resident and their family.
6. What palliative care concretely does
To make palliative care concrete, here is what it changes in the daily life of a resident in a Nursing home:
♥ What palliative care changes concretely
- Pain is systematically assessed at each visit, with appropriate tools (DOLOPLUS, ALGOPLUS for non-verbal residents) — not just when the resident complains
- Treatments are adapted for comfort: we stop what no longer relieves, we strengthen what does relieve
- Unnecessary examinations (repeated blood tests, X-rays, hospitalizations for assessment) are stopped — they no longer provide information that will change the care approach
- The environment of the room is adapted for comfort: soft lighting, music if the resident liked it, family presence facilitated outside of usual hours
- An advance care plan is written — to avoid decisions in emergencies and respect the wishes of the resident
- The family is informed and involved — not afterwards, but in real time and in the decision-making
- Mouth, skin, and positioning care are reinforced — small comfort gestures that have a huge impact on quality of life
7. The role of families in palliative care
Modern palliative care explicitly recognizes that the family is part of the care unit. It is not just a formula — it is a practical reality. The suffering of loved ones is taken into account, their need for information is respected, their presence is facilitated, and support is offered to them — during the palliative phase and after death.
In practice, this means that families can and must be involved in important decisions: stopping certain treatments, transitioning to comfort feeding, deciding not to hospitalize in an emergency. These decisions do not solely belong to them — they first belong to the resident, then to the medical team — but families have the right to be heard, to understand the reasoning, and to express their emotions around these moments.
8. The 5 most common misconceptions
“Palliative care is when nothing more can be done.”
Palliative care is when we do things differently — prioritizing comfort over healing. It is an active and demanding approach, not an absence of care.
“Morphine at the end of life speeds up death.”
At the right dose, morphine relieves pain without shortening life. Not treating pain is infinitely more problematic than treating with well-dosed morphine.
“Asking for palliative care is abandoning your loved one.”
It is, on the contrary, a decision of lucid love — choosing comfort and dignity rather than therapeutic relentlessness that prolongs suffering.
“Palliative care is reserved for cancers.”
Palliative care applies to any serious and progressive illness — advanced dementia, heart failure, severe COPD, neurological disease, old age with extreme frailty.
“Not eating is suffering.”
At the end of life, loss of appetite is a natural process. The body gradually shuts down and no longer needs food as before. Forcing feeding can, on the contrary, create discomfort.
9. Mobile Palliative Care Teams (EMSP)
Not all nursing homes have an internal palliative care unit — and that's normal. But all nursing homes can call upon a Mobile Palliative Care Team (EMSP) — a system created specifically to bring palliative expertise to facilities that do not have it internally.
An EMSP is made up of specialized professionals — doctor, nurse, psychologist, sometimes social worker — who travel to the establishment at the request of the caregiving team. Their role is one of advice and support, not substitution: they do not replace the existing team, they strengthen it with their expertise and external perspective. They can help assess complex pain, decide on sedation, accompany a difficult conversation with the family, or support exhausted caregivers.
Every French department has at least one EMSP. If your nursing home does not regularly call upon it, it is a valuable resource to activate — without waiting for the situation to become critical.
10. A right, not a favor
It is important to clearly remind: palliative care is a right in France. The law of June 9, 1999, confirmed and strengthened by the Leonetti law of 2005 and the Claeys-Leonetti law of 2016, guarantees any sick person whose condition requires it access to palliative care and support.
This is not a favor granted by an understanding doctor. This is not something that is obtained by insisting. It is a right that the resident and their family can request, demand if necessary, and whose absence can be reported.
🎓 Train your team in palliative care in nursing homes
The DYNSEO training "End of life: support, caregiving posture, and family support" covers palliative care in its clinical, ethical, and human dimensions. Qualiopi certified, OPCO funding possible.