If you or a loved one are dealing with a serious illness, palliative care might just be the thing you need! Many people have not heard of palliative care or are unsure about the benefits of palliative care. But it’s worth your time to learn more because the benefits of palliative care can be tremendous. Read below to learn the what, why and when of palliative care. You’ll be glad you did!
What exactly is palliative care?
Simply put, palliative care improves the quality of life for seriously ill patients and their families. Palliative care is appropriate for patients in active treatment or for those at the end of life.
Palliative care focuses on the relief of side effects, discomfort, symptoms, emotional stress, and other difficulties associated with serious illness.
It does not replace primary medical treatment. Instead, palliative care teams work with patients’ medical teams to make life better for patients and families.
Who is on a palliative care team?
Typically, a palliative care team consists of doctors, nurses, social workers, pharmacists, nutritionists, religious or spiritual advisors, and other professionals. The team works with the patient, family, and the treating doctor(s) to develop and administer a program.
It’s not hospice care.
Hospice care is for patients at the end of their lives. Although hospice care includes palliative care, not all palliative care includes hospice care. For more information on hospice care, read my post The Pros and Cons of Hospice Care.
What are the benefits of palliative care?
Palliative care eases symptoms and side effects.
A palliative care program may treat pain, fatigue, shortness of breath, nausea, constipation, sleep issues, and many other symptoms. And palliative care can help patients and family caregivers cope with anxiety, depression, and stress.
It can help with decision making.
The palliative care team helps patients and families understand treatment options. Additionally, the team works with the patient and family to learn the patient’s personal goals and desires.
The palliative care team improves communication among medical providers.
A palliative care team improves communication between the patient and his/her medical team, and among the entire medical team. And the palliative care team coordinates care with all medical team members.
Furthermore, the team will make sure every member of the medical team treats the patient according to his/her desires.
The team can help make transitions between care settings smoother, such as when a patient moves from the hospital to either a rehab center or his/her own home.
Who can benefit from palliative care?
Patients of any age, including children, can benefit from this care at any stage of an illness or injury.
Where can patients receive these services?
Patients can receive these services at home, in a long-term care facility, or in a hospital.
Research demonstrates the benefits of palliative care.
Studies show that patients who receive palliative care report improvement in:
- Pain, nausea, and shortness of breath.
- Communication with their health care providers and with their family members.
- A sense of receiving emotional support.
Moreover, research shows that starting palliative care early in the course of an illness helps patients and families by:
- Ensuring that care is in accordance with patients’ wishes.
- Decreasing stress.
- Increasing confidence in decision making.
- Meeting their emotional and spiritual needs.
One study shows a positive impact on lung cancer patients.
A 3-year study of lung cancer patients at Massachusetts General Hospital identified the positive impact of palliative care.
Among patients receiving traditional oncology treatments, those who started palliative care (such as pain relief measures) soon after diagnosis fared better than those who only received traditional treatments.
Additionally, patients receiving palliative care “reported less depression and happier lives as measured on scales for pain, nausea, mobility, worry and other problems”.
Furthermore, even though fewer of them opted for aggressive chemotherapy as their illnesses progressed, this group typically lived 3 months longer than the group getting standard care.
Don’t wait until you’re in the hospital to receive palliative care.
Although you could start working with a palliative care team while in the hospital, you may benefit from a community-based outpatient program.
Interestingly, a recent study found that terminal cancer patients who received outpatient palliative care services had a significant reduction in hospitalizations and end-of-life intensive care. Additionally, these patients had a significantly longer period in hospice care. In contrast, terminal cancer patients who received inpatient palliative care had an increased length of stay in the hospital.
The study authors suggest patients with “advanced cancer should receive outpatient palliative care early, concurrently with cancer treatment“.
In my opinion, it seems logical that other seriously ill patients would also benefit from outpatient palliative care.
Will you or your loved one benefit from palliative care?
Chances are, if you or a loved one is dealing with a serious illness or injury, palliative care is a good idea. However, some patients need it more than others. For instance, consider palliative care if you, or a loved one has physical and/or emotional pain that is not well controlled.
Additionally, it’s a good idea for patients who need help understanding their illness and treatment options.
Despite the strong evidence, most patients don’t receive palliative care.
Unfortunately, many patients who could benefit from palliative care don’t receive it. Why? Most patients don’t know about it, and many doctors don’t recommend it.
Patients aren’t familiar with palliative care.
Researchers surveyed over 3,000 US adults and found that about 71% had no knowledge of palliative care. Even worse, 84.5% of Hispanic respondents stated they didn’t know anything about palliative care.
Their analysis concluded that those 50+ years old had a significantly better knowledge of palliative care than those under age 50.
Moreover, people misunderstood palliative care, even among those who reported they had “adequate knowledge” of palliative care. It’s no surprise that patients and families are not asking their medical team for palliative care – most don’t know what it is!
Financial interests can dissuade doctors.
Certainly, creating and operating palliative care teams costs hospitals and healthcare systems money.
Furthermore, with the current payment system, a palliative care team can lead to negative return. How? A benefit of palliative care programs is a reduction in unneeded hospital stays and ER visits due to improved symptom management. Additionally, better care coordination can drive costs down.
Although the US payment system is slowly evolving to reward providers for quality and efficiency, hospitals still make a lot of money with hospitalizations and ER visits. Therefore, it can be tough for doctors to recommend palliative care, knowing it could harm their own financial interests, and the financial interests of their hospitals. Annoying, right?
Many doctors don’t fully understand palliative care.
Unfortunately, not all doctors understand the benefits of palliative care, with some doctors confusing it with hospice care. Why? Many doctors never receive training on how to address the physical, emotional, and spiritual suffering that patients with serious illnesses often experience, including little or no training regarding palliative care services.
Certainly, doctors who don’t understand palliative care, or don’t realize it is generally covered by insurance, will likely never recommend it to their patients.
How can patients take advantage of palliative care?
In order to receive palliative care, you’ll need to ask your doctor for a referral. This is required for patients in the hospital, at home or in a long-term care facility. As you read above, you may receive some reluctance on part of your doctor, but don’t give up too easily!
Importantly, there is currently a “severe shortage” of palliative care doctors, and experts predict the shortage will worsen in the future. Therefore, it might be tough to find a team, and don’t be surprised if you have to wait to see a palliative care team.
When is a good time to start receiving palliative care?
Certainly, the sooner the better! It’s never too early in the process. But, don’t worry, in most cases it’s never too late either.
Who pays for palliative care?
Good news! Most insurance plans, including Medicare and Medicaid, usually cover palliative care. But, before moving forward, it’s a good idea to call your insurance company and ask what services are covered, length of coverage, and expected co-payments.
Lastly, if you want more information, or you want to find palliative care in your area, visit www.GetPalliativeCare.org.
NOTE: I updated this post on 7-20-22.