Palliative and hospice care: what they are and when

The most common misconception in this area is that palliative care means giving up, and that it begins when treatment stops.

That is not what palliative care is, and the confusion causes people to receive it far later than they could.

The distinction

Palliative care focuses on relieving symptoms and improving quality of life for people with serious illness. It can be provided alongside treatment aimed at curing or controlling the disease, from the point of diagnosis, and for years.

Hospice care — in some systems a distinct service with eligibility criteria, in others the name of the institution providing it — generally refers to care for people whose illness is no longer being treated with curative intent, usually with a prognosis measured in months.

Terminology and structures differ substantially between countries. In the United States, hospice is a specific benefit with eligibility criteria including a prognosis of six months or less and generally the cessation of curative treatment. In the United Kingdom and elsewhere, hospices provide a broader range of services including day care and outpatient support.

The evidence on early palliative care

This is worth knowing because it changes the calculation.

A widely cited randomised trial in patients with advanced lung cancer compared standard oncology care with standard care plus early palliative care from the point of diagnosis.

The palliative care group reported better quality of life and less depression. They also received less aggressive treatment at the end of life — and, unexpectedly, lived longer.

Subsequent studies and reviews have supported the general finding that early palliative care improves quality of life and symptom burden, with the survival finding being less consistently replicated.

The point that matters: palliative care is not associated with dying sooner, and referral is not a decision to stop fighting.

What palliative care actually provides

Symptom management. Pain, breathlessness, nausea, fatigue, constipation, poor appetite, anxiety. Specialist palliative teams are frequently considerably better at this than general services, because it is what they do.

Communication support. Helping people understand their situation and make decisions, and helping families have difficult conversations.

Psychological and spiritual support, for the patient and the family.

Practical coordination, including equipment, care packages, benefits and access to services.

Support for carers, including respite.

Bereavement support afterwards, which many hospices provide for a year or more.

Where it is delivered

Hospital palliative care teams, seeing patients on wards.

Community teams, visiting people at home. In many countries this is the largest component.

Hospice inpatient units, for symptom control or for end-of-life care. Stays are frequently short and for a specific purpose, and a substantial proportion of people admitted to a hospice for symptom control go home again — which surprises people.

Care homes, with palliative input.

Getting referred

Referral routes differ. Generally a doctor makes the referral, and in many systems patients and families can ask for one.

Ask directly: "Would a palliative care referral be appropriate?" It is a reasonable question and clinicians rarely object to it.

The obstacles are usually clinicians being reluctant to raise it for fear of distressing the patient, and patients being reluctant for fear of what it signals. Both are addressable by someone simply asking.

Referral does not preclude continuing treatment in most systems, though in some — notably where hospice benefits have eligibility rules — it may.

The place of care question

Most people, when asked, say they would prefer to die at home. A substantial proportion die in hospital.

The gap has several causes: symptoms that become unmanageable at home, carers who reach the limit of what they can do, admission during a crisis, and the absence of adequate community support out of hours.

What makes home death more achievable: early planning, community palliative involvement, anticipatory medication in the home, an out-of-hours plan, equipment in place, and a carer who has support.

It is worth being honest that home is not always the better option. Caring for someone dying at home is demanding, and families sometimes carry the strain because they believe they promised. Changing the plan is permitted, and hospices exist partly for that.

What to ask about

What is the plan for symptom control, and who do we call at three in the morning?

Is there anticipatory medication in the house, and does someone know how to use it?

What happens if things become unmanageable at home — is there a bed available?

What support is there for the carer?

Has the preferred place of care been recorded, and who has that information?

That third question is the one families most regret not asking.

The access problem

Worth naming. Access to palliative care is unequal — between countries, between regions, and between conditions.

People with cancer are considerably more likely to receive specialist palliative care than people with heart failure, respiratory disease, dementia or frailty, despite comparable symptom burden. This is well documented and it is improving slowly.

If you are caring for someone with a non-cancer condition and have been told palliative care is not applicable, it is worth pushing.

Palliative and hospice services, eligibility and funding differ substantially by country. Ask your doctor, or contact a national hospice or palliative care organisation for local information.