Although palliative care is a relatively new field, there is an expectation, as in other areas of medicine, that most healthcare providers will know the basics. To use an analogy, most doctors know enough about depression to be able to screen for depression, make a diagnosis, and to start someone on first-line treatments, including therapy or medications. There are also situations where someone with depression may benefit from seeing a specialist, namely a psychiatrist, psychiatric advanced practice provider or psychologist. For example, if someone has severe symptoms or isn’t responding to the first line of medications. In past blogs we discussed strategies to use palliative care principles in self-management and to get your provider to tap into their basic palliative care skillset. In this blog we’ll review situations where you or your family may want to request a referral to specialist palliative care or hospice for an extra layer of support.
You are nearing the end of your life and you would like to prioritize time with family and out of hospitals. In the US, hospice, is a benefit that is covered by all insurances. Hospice is designed to support people with an expected prognosis of 6 months or less to stay at home (i.e. avoid hospitals) and maximize comfort. 90% of the time hospice comes to you (there are hospice homes and inpatient hospice for people who need extra support) and provides medical care, medical equipment, medications and a limited amount of nonmedical support. Ideally, you can request a referral for hospice from one of your existing providers but you can also contact a local hospice directly.
You are in the hospital and need support to treat difficult symptoms (e.g. pain), coordinate care, come to terms with a new or worsening condition, or ensure that treatments offered match your goals. If you or a loved one is in the hospital and feeling like you could use some extra support, inpatient palliative care can be a godsend. Almost all hospitals now have an inpatient palliative care team whose goal is to deliver expert symptom management, emotional and spiritual support, and to clarify and communicate goals to other providers. You can usually get a palliative care consult from one of your physicians, but, if needed, may be able to get someone else in the hospital (e.g. nurse, patient representative) to get palliative care involved.
You have a life-threatening or life-limiting condition and need support to treat difficult symptoms, coordinate care, come to terms with your condition, or to guide you or your family in how to plan for the future and optimize quality of life. Although this situation may be the most common, it is also the most challenging because outpatient palliative care clinics are something that is relatively new. Outpatient palliative care is not available in many parts of the country, and even where it is available, there may be restrictions on who can access it (e.g. only cancer patients). Part of the reason I wrote the prior blog on how to create palliative care as a patient or family member is concerns with accessing it. That being said, there is increasing evidence for early involvement of outpatient palliative care for many conditions and the availability of these services is improving.
In addition to asking for a referral, you may need to convince your healthcare provider that you know what you are asking for or do your own research on what’s available in your area. Regarding convincing your provider, be forewarned that many physicians still hold an old-fashioned view of palliative care and may something like “I don’t think we’re there yet” or “I don’t think you’re ready for that” with the implication being that you should be more advanced or dying before getting extra support. Regarding doing your own research, I’ve found that providers who don’t regularly refer patients to palliative care may not be aware of providers even at their own institution. All that being said, it can still sometimes be difficult to find an outpatient palliative care clinic that is a good match for you (see also this Ask Dr. Benzi blog).
Image from: Hartford Healthcare