Palliative care physicians are constantly having “the hospice talk” with patients who are days away from death, a talk that comes too late and not in a way that will be beneficial to the patient and their family. People often believe that the only thing a palliative physician is responsible for is talking them into going to hospice.
There is so much more that needs to be understood about palliative care by healthcare clinicians and the general public, starting with distinct benchmarks in a patient’s journey where palliative care should be considered.
The Goal of Palliative Care
Palliative care is not just a brief stint that a patient does before transitioning to hospice; it is a level of support and treatment given to patients to provide comfort in their lives.
Do not think that palliative care only addresses people who are terminally ill. In fact, there are many patients, both children and adults, who qualify for palliative care services, especially community-based palliative care services, but do not get a referral because of this misconception.
People think that palliative care is “almost hospice” or “hospice lite,” and that is where the goal of palliative care gets skewed. Many pediatric patients have life-changing diseases but are still expected to live to adulthood. We have to make sure that, as these children grow, we’re considering all of the encounters they will have throughout their lives and providing care within that framework.
Some of these diseases will carry into adulthood for pediatric patients, as long as the patient goes without complications from treatments. These types of disorders require palliative care to consider not only how this is impacting their treatment in the hospital, but also how this is going to smooth transitions into the community. How is this going to work with school? How is this going to change family life? What siblings need to be involved so that everyone can look at disease management as something that is going to be a part of their lives?
When to Consider Palliative Care
Clinicians should recommend a palliative consult when a patient’s situation includes:
- A new diagnosis
- Pain and symptom management challenges
- Unplanned or prolonged hospitalizations
- New technology
- Complex psychosocial needs
- Multiple subspecialty services
- Complex care coordination needs
- Lack of consensus for decision-making about goals of care
- Complex survivorship or bereavement issues anticipated
Common Diagnoses Seen in Palliative Care
Cancer is a common diagnosis among pediatric palliative care patients. Congenital defects and chromosomal abnormalities, like Trisomy 18, are high on the list as well.
Down syndrome, for both adult and pediatric patients, has quite a few medical conditions that go along with it. In fact, we have seen a lot of congenital heart defects related to down syndrome. There is also a lot of cardiac conditions and neural tube defects, like spina bifida, that palliative care helps treat.
Adult palliative patients commonly have kidney, liver, lung, heart or neurological diseases. These diseases have symptom challenges throughout the disease process that can be best managed with palliative care on a greater or lesser extent depending on their clinical status changes. Palliative care revolves around keeping a patient healthy and happy with the medical modifications that are necessary for them to live normally. Looking at it beyond just cancer care will help patients understand how palliative care can be useful.
Is It Too Late to Start Palliative Care?
If a patient was not referred early, there is the possibility of disease progression, but this does not necessarily rule out the efficacy of palliative care.
The benchmarks in a late-stage illness where the patient can still benefit from palliative care are:
- Disease refractory to treatment
- New progression of the disease
- Relapse after remission
- Life-threatening complications
- Treatment-related toxicities
Palliative care allows a patient to work on symptom management, living life as normally as possible. If this becomes less effective, that is the appropriate time for a palliative care physician to broach “the hospice talk” and consider a transition.
Axxess Hospice includes an intuitive palliative care workflow within the cloud-based hospice software that prioritizes compliance and compassionate care.