Palliative Care Is Not Giving Up

I used to work at a palliative care center, and I learned that the words "there's nothing more we can do" are never true. Even when a disease can't be cured, we can still make a patient hurt less, breathe more easily, go home, talk with the people they love and leave this life the way they wish. That is the heart of palliative care.

What is palliative care?

The World Health Organization defines palliative care as care that aims to improve the quality of life of patients and families facing life-threatening illness, by preventing and relieving suffering, whether physical, psychological, social or spiritual.

Common misunderstandings:

• It is not stopping treatment. Patients can still receive chemotherapy, dialysis or disease-specific medicines alongside it.
• It is not hastening death, nor prolonging life beyond what is meaningful. It respects the natural course of the disease and the patient's wishes.
• It is not only for cancer.

Who is it for?

• Advanced cancer
• Chronic heart failure, severe chronic obstructive pulmonary disease (COPD)
• End-stage kidney failure, both people on dialysis and those who choose not to have dialysis
• End-stage liver cirrhosis
• Dementia, Parkinson's disease, severe stroke, motor neurone disease
• Very frail older people with multiple illnesses
• End-stage AIDS that no longer responds to treatment, which is now much rarer because antiretroviral medicines work so well; see HIV doesn't have to mean dying young

Why starting early is better

The study by Temel and colleagues (NEJM 2010) in patients with metastatic lung cancer found that those who saw a palliative care team from the start had better quality of life, less depression and less aggressive treatment near the end of life, and they did not live shorter lives. The American Society of Clinical Oncology (ASCO) guidelines therefore now recommend that patients with advanced cancer receive palliative care early.

What does the care cover?

Physical: appropriate pain control, including morphine or other opioid painkillers as assessed by a doctor. When used correctly, they do not cause earlier death or the kind of addiction many people fear. It also covers breathlessness, nausea, constipation, loss of appetite, sleeplessness and pressure sores.

Psychological: fear, sadness, anger and anxiety, in both patients and caregivers.

Social: finances, work, unfinished business, healthcare entitlements and the burden on caregivers.

Spiritual: the meaning of life, forgiveness, religion and wishes before death.

Intimacy and relationships: many patients still want closeness with their partner. Touching and hugging are not wrong, and the care team should make room to talk about this.

Quality of life

Physical

• Pain control, including morphine as assessed by your doctor
• Breathlessness, nausea, constipation, poor sleep

Emotional

• Fear, sadness, anger
• For patients and caregivers

Social

• Money, work, treatment entitlements
• Caregiver burden

Spiritual

• Meaning in life, forgiveness
• Religion, wishes before dying

Closeness

• Touch, hugs
• Making space to talk

It does not mean stopping treatment. Patients can continue disease treatment alongside it.

Communication and advance care planning

The most important part of this work is talking. The team helps patients and families to:

1. Understand the illness and its likely course honestly, to the degree the patient wants to know
2. Explore what matters most to the patient, for example staying at home, not being in pain, or waiting to see a child who lives far away
3. Make treatment decisions that fit those goals, such as intubation, resuscitation or tube feeding
4. Record them in an advance care plan, and, if they wish, an advance directive under Section 12 of Thailand's National Health Act; see Living will

A family conference is a tool that helps everyone reach the same understanding and reduces conflict; see more in Family therapy and family conferences.

1. 1Understand the illnessHonestly, as far as the patient wants to know
2. 2What matters moste.g. staying home, no pain, waiting to see a child
3. 3Choose treatmentsTo match those goals, e.g. breathing tube, resuscitation
4. 4Record the planAdvance care plan and, if wanted, a Section 12 living will

A family conference helps everyone understand the same thing.

Caring for the caregivers too

Caregivers are often exhausted in body and mind, and feel guilty when they want a rest. Palliative care includes caring for caregivers: finding people to take turns, teaching home-care skills and supporting grief after a loss (bereavement). If you feel drained or depressed, call 1323, Thailand's free 24-hour mental-health hotline (Thai language; ask for English support).

How to access it in Thailand

Many public hospitals have palliative care units or teams and home-visit services. Thailand's Universal Coverage scheme covers palliative care, including at home, and the necessary pain medicines. Ask at the hospital where you are being treated or at your local primary care unit. Expats and visitors can ask their private hospital or insurer about palliative services.

How Dr. Kris Clinic can help

I have experience in family medicine and palliative care. I can counsel families, explain the options, help plan care in advance and write an advance directive, and coordinate with the hospital team that is caring for you. English-speaking consultations are available. Read a story from my consulting room in My first patient: an 80-year-old man.

Go to hospital or call 1669 (Thailand's medical emergency number) if the patient has a sudden, unplanned change, such as severe difficulty breathing, uncontrolled pain or heavy bleeding, and tell the team whether the patient already has an advance care plan.