Testimony on Proposed Regulations on Palliative Care and End-of-life Care

The Department of Public Health recently issued draft regulations for implementing the section of Chapter 224 that requires the provision of information to appropriate patients about options for palliative care and end-of-life care (in October we blogged about the draft regulations.  The public hearing on the draft regulations was held on November 21 and written testimony was also submitted. You can find all of the written testimony on the DPH website. Some of the points that were raised by a number of those providing testimony include:

  • Distinguishing between palliative care and hospice care and helping to clarify the difference to patients and families. There is much confusion about the two, and there is a lack of understanding in particular about palliative care, which often should start much earlier than hospice and should also often be offered to patients with serious illnesses, including some patients with chronic conditions, and not just to those with terminal illnesses. For example, read this NY Times article about palliative care from earlier this week. There is also a helpful chart in the testimony provided by the Home Care Association.
  • Expanding the definition of appropriate patient to include not just those who would be eligible for hospice care but, for example, those who may be eligible for palliative care due to a serious illness or debilitating chronic condition.
  • Allowing for the information to be provided to family members/caregivers when appropriate (eg. if the patient has dementia).
  • The importance of providing training and education to providers who will be giving this information to patients.
  • The importance of recognizing the need to be sensitive to cultural differences in terms of how the information is communicated.
  • Encouraging hospitals to work with their Patient and Family Advisory Councils (see our information at www.hcfama.org/pfac) as they seek to educate their patient community about palliative care and end-of-life care options and as they train their providers in this area.

We will keep you posted on when the regulations are finalized.
-Deb Wachenheim

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