For patients living with chronic illness, palliative care may be a viable option to help improve their quality of life. However, raising the subject can often be difficult and uncomfortable. Approaching the discussion with empathy and compassion can help put the patient at ease.
What Is Palliative Care?
Although the terms palliative care and hospice care are sometimes used interchangeably, there are some differences. Both are approaches to care for patients with life-limiting conditions. Palliative care focuses on managing symptoms and providing support for the highest possible quality of life, even while disease treatment is continuing. Palliative care may include spiritual and psychological aspects, and employ a team of providers from different disciplines.
Though many people think of palliative care as a distinct, separate care team that includes specialized doctors, nurses, and social workers, this is often not the case. Jeffrey Yee, MD, an internist specializing in hospice and palliative care at Dignity Health Medical Foundation - Woodland and Davis, said palliative care doesn't always have to be a differentiated team. "Oftentimes, it can be the physician and their office staff providing this support," he said. "I think the focus in these situations includes helping the patient understand the prognosis of their disease, what treatments have to offer, what they will not do, and what the potential side effects and risks are."
Hospice care is very defined care that's provided when active, disease-specific treatment is stopped. Patients may enroll in hospice when these treatments are stopped, and their physician certifies that they believe the patient will likely die within six months. The hospice team often then becomes the primary care provider.
When to Discuss Palliative Care Options
Although palliative care is commonly thought of when patients are nearing end of life, an article in BMJ Open suggests that palliative care interventions are helpful for patients living with chronic illness that's at the earlier stage as well. For this group of patients, palliative care can help with pain management, and can also ease the burden on caregivers and provide other patient-centric treatment options.
Dr. Yee agrees that there isn't a specific point in time that palliative care approaches should be used, and they can be beneficial throughout the course of a serious illness, using a cancer patient as an example.
"What should be offered to the patient when first-line chemotherapy has not been effective?" he said. "Often times, second-line chemotherapy is automatically adopted. But perhaps patients could be offered other options. Other treatments may have comparatively lower response rates but may be less burdensome because of less side effects, less complications, or lower cost."
Dr. Yee believes that his greatest impact when providing palliative care is helping patients and families unify medical treatment decisions with life priorities. What do the patient and family members understand about the diagnosis? Can treatment bring the patient closer to what is important or could it possibly take them further away? And with what kind of hope for life prolongation? The key is to speak empathetically and really listen to patients' responses.
Cultural Considerations to Make
Culture and religion are also factors to consider. A study published in Palliative Care: Research and Treatment concluded that physicians must not only understand a patient's individual preferences but his or her religio-cultural needs as well before offering palliative care. Dr. Yee advises that it's important for physicians to understand that patients from other countries and cultures may have different frameworks by which medical treatment decisions are made.
"Western culture typically has the patient as the decision-maker," he said. "But in other cultures, the norm is for decision-making to be made by other family members or the family as a whole."
There may also be cultural differences regarding pain management. For example, in the Buddhist tradition, it is important for a person to think clearly and be mindful, so a Buddhist patient may decline pain treatment out of fear of potential side effects. In Orthodox Judaism, it's not generally permitted to withdraw care that has already been instituted. However, it is considered acceptable, in end-of-life situations, to utilize treatments that can provide comfort to the patient even if the treatments may possibly shorten life. Comparatively, Hindus view pain and suffering as a part of life and such treatment is unlikely to be accepted.
If your patient has cultural or religious beliefs that may prohibit the use of pain medications, be sure to explore other palliative care interventions that may be permissible. While the goal is to provide the patient with what doctors believe is better "quality of life," "quality of life" is clearly individualistic and culturally determined, and we should be sensitive not to impose our cultural ideas. Treatment shouldn't conflict with their beliefs, and family members or community members may be able to share information on acceptable treatments. Colleagues from a similar background may also be able to provide guidance on the best approach.
Ultimately, when discussing palliative care or end-of-life treatment options with patients, whatever their cultural background, it's always important to consider their personal preferences and those of their caregiver or family members. This understanding is fundamental for delivering high-quality care.