Palliative care at home

Palliative care is not hospice

This is the confusion that stops families asking for help, so it is worth being direct about. Hospice is for the last months of a terminal illness and generally means treatment aimed at curing the disease has stopped. Palliative care has no such condition attached. You can receive it while you are still having chemotherapy, still on dialysis, still seeing a cardiologist and still very much intending to get better.

It can begin at diagnosis. It can continue for years. Many patients receive palliative care, improve, and stop needing it. Asking for palliative care is not a decision about how your illness ends, it is a decision about how you feel while you live with it.

Symptoms we work on

Pain, breathlessness, nausea, constipation, fatigue, poor appetite, swelling, itching, difficulty sleeping, anxiety and low mood. These are the things that quietly wear a person down, and they are often treated as unavoidable when they are not.

We have the time to take them seriously. A home visit runs long enough to work out which symptom is actually the worst one for you, what is causing it, and what can be adjusted. Very often the answer involves removing a medication rather than adding one.

Living with a serious illness at home

We look at how the illness is affecting daily life, not just the numbers. Whether you can still get to the bathroom safely. Whether eating has become a battle. Whether the equipment in the house is the right equipment. Whether the person caring for you is coping.

Practical changes make a large difference here: a different pain schedule so you are not waiting for the next dose, a commode that removes a dangerous night-time walk, oxygen set up so the tubing does not become a trip hazard.

Goals of care, at your pace

At some point most families want to talk about what happens next, and that conversation goes far better at a kitchen table than in an emergency department at two in the morning. When you are ready, and only then, we work through what matters most to you, what treatments you would and would not want, who should speak for you if you cannot, and how to record all of that properly.

In New Jersey that usually means an advance directive, a named healthcare representative and, where it fits, a POLST form, which turns your wishes into medical orders that other clinicians must follow.

Support for the family

The person doing the caring is part of this. We cover what to expect, which symptoms are worrying and which are not, who to call at three in the morning, and how to get respite before exhaustion becomes a crisis. Caregivers are allowed to say they are struggling, and it is useful information rather than a failure.

Working with your other doctors

Palliative care sits alongside your oncologist, cardiologist, nephrologist or pulmonologist rather than replacing any of them. We send notes, we ask questions on your behalf, and we try to make sure that four specialists managing four organs add up to one coherent plan for one person.

If the time comes when hospice is the right choice, we will say so honestly and help arrange it with a hospice agency, rather than leaving the family to work it out alone.