Earlier this year, I wrote an article for CMSA Today titled Defining and Describing Palliative Care With a Focus On Case Management. In that article, I discussed palliative care as an essential component of care for patients who are living with serious illnesses and the call to view palliative care as a human right. My article addressed the need for every clinician, including case managers, to have and expand their primary palliative care skillset. An essential aspect of primary palliative care skills is assessing and recognizing the needs of patients living with a serious illness requiring referral to a specialist palliative care provider/service.
Case managers are perfectly positioned to identify the palliative care needs of patients living with serious illness. More importantly, case managers are experts in their organizational, system and community resources. Case managers are effective advocates and change agents and can ensure their patients receive referrals to appropriate services and programs. What can be difficult is finding the words to begin conversations about serious illness and palliative care with our patients.
The case managers I work with often struggle with opening the discussion with patients and families about palliative care and referring them to specialty services. Case managers may worry that initiating the palliative care conversation may cause anxiety for their patients and families, that the patients and families will not be receptive to the referral, and that the medical providers may be resistant to incorporating palliative care into the patient's plan. Case managers want to know how to initiate the conversation to be acceptable to the patient, family, and the medical providers involved in the patient’s care.
One of the conversation strategies that I encourage my team and colleagues to use to open the conversation about initiating a referral for palliative care services is:
Palliative care is supportive medical care for people who are living with a serious illness. Your _______ (cancer, dementia, heart failure, kidney failure, liver disease, ALS, etc.) is considered a serious illness.
The critical information you are conveying to the patient and family is that the patient has a specific diagnosis, which is serious and warrants the need for palliative services.
Often, clinicians try to explain palliative care to patients in a way that tells them what it is NOT. Examples of this are trying to reassure patients and families that palliative care is NOT hospice and will NOT limit their treatment options. It is more important to tell patients, families and fellow clinicians what palliative care IS. Here are examples of affirmative words and key points to communicate to patients and families about palliative care:
- Palliative care IS an extra layer of support to help you deal with the stressors that you are facing due to your serious illness.
- Palliative care IS appropriate at any stage of your illness.
- Palliative care CAN be provided while you are seeking or receiving medical treatments for your serious illness.
- You CAN continue to see your primary medical providers and have palliative care specialists involved in your care.
- Palliative care specialists WILL provide expert-level pain and symptom management.
- Palliative care specialists WILL have the time and expertise to talk to you about your goals and help plan your care.
Effective and compassionate communication is essential to meet the needs of patients living with serious illness. Case managers are trusted members of the patient’s care team and are experts at creating trusting bonds with patients and families, short and long-term. Case managers are often the team members initiating discussions with patients and families about involving palliative care services in their care. The trusting relationships with patients allow the case manager to communicate effectively with patients about palliative care.
Key Points:
- Case managers are skilled at identifying patients who need palliative care services.
- Patients need to understand they have a serious illness.
- Patients want to know what palliative care IS.
- Case managers possess the skills and trust required to communicate with patients about serious illness and palliative care.
For more information on serious illness communications skills and palliative care, please visit:
Ariadne Labs Serious Illness Care: www.ariadnelabs.org/serious-illness-care/
Center to Advance Palliative Care Patient Information and Provider Directory: www.getpalliativecare.org
Nicole DePace, MS, APRN, GNP-BC, ACHPN
Director, Advanced Illness Programs
Palliative Care Nurse Practitioner
NVNA and Hospice, Norwell, MA
Bio: Nicole DePace, MS, APRN, GNP-BC, ACHPN, is an experienced palliative care nurse practitioner and has successfully developed and implemented a nurse-led model of community-based care in a home healthcare organization. Nicole is passionate about nurturing palliative care skills in all clinicians and improving access to palliative care support for all patients who are living with serious illness. She serves as the President of the Boston Area Chapter of the HPNA and started and chairs the Hospice and Palliative Care Federation of MA APRN Community Palliative Care Group. Nicole is a PhD student at University of Massachusetts, Boston, studying population health and health policy. When not working, Nicole enjoys spending time with her family and friends, reading poetry, hiking and making homemade pasta.
For more on palliative care, take the course "Respecting Choices: A Guide to Advanced Care Planning" in the CMSA Educational Resource Library (ERL) at https://www.pathlms.com/cmsa/courses/40415
This presentation will help the attendees to develop a toolkit for advanced care planning with patients and their families. The ability to clarify for patients, as well as health care providers, the difference between palliative care and hospice care will be an aid in the advanced care planning process. As will be presented, patients often have different goals for care but are not able to attain those goals. This presentation is focused on more patients meeting their goals for their care.
Thank you Nicole for this excellent advice! Focusing on what palliative care is rather than what it’s not is such a great tip. Your CMSA Today article and this blog should be required reading to help case managers be as effective as possible in advocating for their patients with serious illnesses.