Palliative Care Matters
Rosetta’s Story:
Rosetta was living with her daughter while being treated for cancer. The side effects of her treatment were difficult, and she was experiencing significant pain. Only when her daughter was out of the room, did she indicate to her infusion nurse that she wanted to stop her chemotherapy. Then she added, “I do not want my family thinking that I don’t want to live or that I am giving up”. A palliative care consultation was offered to Rosetta and later her daughter called the nurse to say, “We are not ready for that yet. Aren’t they the same as hospice?” The nurse explained that they could help Rosetta with her pain and offer an additional layer of support to her and the family. Reluctantly, the daughter agreed to the consult. The palliative care nurse practitioner came out for a home visit and addressed Rosetta’s physical needs first with recommendations for pain management and nutritional support. After a few visits, a family meeting was scheduled for Rosetta to share her wishes with her family.
Some Background:
Hospice and palliative care often get confused with each other. Both palliative care and hospice share the goal of improving quality of life for seriously ill individuals, but palliative care can start earlier and continue along with potentially curative treatment. It can also include end of life care. As the hospice benefit is currently structured, to be eligible an individual should have an expected prognosis of 6 months or less and have decided to stop treatments that are focused on cure.
Palliative care is still a bit of a secret, however, to the general public and if people do not know what it is, then they certainly will not know when to ask for it or what to think if it is offered to them. In 2019, a national telephone survey of adults regarding palliative care was done and compared to a similar one done in 2011 by the Center for the Advancement of Palliative Care (CAPC). It turned out that there was little change in the public’s awareness of or interest in palliative care over those 8 years. In 2011, 70% of adults surveyed had no knowledge at all about palliative care and in 2019, 71% of adults were not knowledgeable about or had never heard of palliative care.1 Another survey done in 2019 by Public Opinion Strategies Poll, revealed that after hearing the definition of palliative care by CAPC (see below), over 80% of adults indicated that they would definitely consider it for themselves or a loved one if they had a serious illness.2
CAPC describes palliative care as:
Specialized medical care for people living with a serious illness.
It is focused on providing relief from symptoms and stress of a serious illness.
The goal is to improve quality of life for both the patient and the family.
It is provided by a specially trained team of doctors, nurses, social workers, and other specialists who work together with a patient’s other doctors to provide an extra layer of support.
It is based on the needs of the patient, not on the patient’s prognosis. This care is appropriate at any age and at any stage in a serious illness.
For palliative care, finding out what matters most to patients and families is key to helping establish the goals for their healthcare and to align them with their medical treatment plan and advance directives.
The Rest of Rosetta’s Story:
Rosetta’s pain was getting worse and the palliative care provider was able to assess her at home and see first-hand how it was affecting her function and how she was managing it, and then make recommendations. In addition, Rosetta had an opportunity to privately express her wishes about stopping her chemotherapy, and with her agreement, palliative care facilitated a family meeting. Rosetta was able to explain that she felt her time was getting short and she did not want to spend it going back and forth to appointments and she hoped to stay out of the hospital. She wanted her family to understand that quality of life for her meant enjoying whatever time she had free from medical interventions, but that this did not mean she was giving up. She and her daughter were able to agree that there were other options, and keeping Rosetta safe, comfortable, and at home with hospice support could be one of them. They discussed this with the oncologist the following week, who understood the burden of Rosetta’s current treatment and her wish to stay at home. He planned to remain involved and be available along with hospice services.
The focus for palliative care was always on what mattered most to Rosetta and helping to support and advocate for her and her family. In this case, hospice was the best way for her to have the care and support needed to stop her cancer treatment and stay at home. Had Rosetta preferred to continue her chemotherapy, palliative care could have stayed involved to monitor her symptoms and the effects of chemotherapy and to offer guidance and recommendations along the way. Following the family meeting, the daughter admitted that she was upset when she heard about the palliative care referral and thought it meant that there was nothing more the medical team could do for her mother and now she wished palliative care had been involved earlier.
2https://www.capc.org/documents/651/
To read more about palliative care and to find out where it is available, the website getpalliativecare.org is a great resource.