National Hospice and Palliative Care Month: Meeting You Where You Are
Meeting you where you are. That’s what nonprofit Capital Caring Health (CCH) does when you or a family member are facing serious advanced illness, and don’t know where to turn for the compassionate care and support you need. And that’s also the theme for this year’s National Hospice and Palliative Care Month.
The original intent of this special observance remains as important as ever: to increase public awareness about the benefits of hospice and palliative care. Unfortunately, far too many people today either delay starting hospice/palliative care, or skip it altogether, mostly due to a lack of understanding about how these programs can actually enhance life for both patients and family caregivers. The problem is even more pronounced within communities of color and the LGBTQ community, both of whom—with longstanding histories of poor access, cultural differences, mistrust, and healthcare disparities—are among the lowest users of hospice services nationwide.
So, despite being the most generous of Medicare benefits—up to 6 months of services (with extensions available) and usually fully covered—most Americans only spend a little over two weeks in hospice care; it’s even shorter for communities of color. And that’s too short, and tragic!
As we celebrate this month, CCH is working to improve understanding of both hospice and palliative care and ensure that families and communities know about the help that’s available to them, close to home. We are also redoubling our efforts to correct misperceptions, overcome barriers, and reduce the distrust that keep communities of color and other underserved communities from taking advantage of this valuable option. Our hope is that eventually everyone can make an informed decision about the options available to them, when the time is right.
Hospice versus Palliative Care: What’s the Difference?
Hospice: Hospice was created decades ago specifically to help patients and their families deal with the emotions and distress that come when care designed to cure or slow the progression of disease stops working. As such, hospice helps family members and their loved one approach the end of life through specialized care, support, and education. Basically, hospice care is comfort care, and helps make the time remaining a more peaceful, even rewarding, experience for both patients and families. The family’s and patient’s desires are integral to the healthcare plan; their wishes remain central throughout hospice’s duration.
Founded in 1977, Capital Caring Health is one of the oldest and most established hospices in the nation. While we offer both inpatient and outpatient hospice care to all ages, including infants and children, it is provided in the familiarity of the patient’s home 95% of the time.
Palliative Care: Like hospice, palliative care has the same goals to bring comfort and relief from pain, emotional distress, and other symptoms, to help anyone at any age, suffering with a chronic, progressive illness. The key difference is that, unlike in hospice, patients receiving palliative care may continue treatments to battle their disease. If patients get better, they may discontinue palliative services; if the disease progresses, they can seamlessly move into hospice without any interruption in care.
While CCH may be best known as a leader in hospice, we also provide palliative care. As with hospice, there’s a dedicated specialized, interdisciplinary care team, including more than 20 board-certified doctors, nurse practitioners, nurse aides, social workers, pastoral counselors, and volunteers to help you better understand the progression of your specific illness and what to expect, along with discussing your care options, preferences, and goals. Also, practical assistance is available to reduce caregiver stress by helping with insurance issues, scheduling appointments, arranging transportation, facilitating patient/family communication, finding any needed resources, and more.
CCH has also developed special programs to better meet the needs of our local population. Primary Care at Home makes sure those home-limited due to chronic illness or disability don’t miss needed primary care services; Our Advanced Cardiac Care program keeps patients with congestive heart failure (CHF) safely at home and out of the hospital.
To learn about how hospice/palliative care and earlier enrollment can make a profound difference in your life, keep reading.
More Time = More Comfort, Less Suffering for the Patient
Our holistic, patient-centered approach to hospice targets physical, psychological, social, and spiritual needs to reduce pain and suffering, soothe spirits, and improve the quality of life. A key focus is managing debilitating patient symptoms that grow worse over time and are difficult for family members to witness, including advanced pain, nausea, insomnia, severe fatigue, shortness of breath, depression, stress, and more. Symptoms may be due to the nature of the advanced illness itself, or a side effect from earlier treatments.
Each dedicated CCH hospice care team includes a physician, nurses, social workers, pastoral counselors, home health aides, bereavement counselors, and volunteers. Care team members get to know the patient and family through ongoing communication, visits, and check-in calls for the best care management.
By enrolling in hospice when first eligible, patients can benefit from a longer pain-free period and reduced suffering, thanks to starting medication, counseling and other support earlier in the course of disease. Both patients and family members experience a huge sense of relief as well as a longer period of comfort and peace through early enrollment.
More Time = More Help for You
Caregiving is demanding work. Many caregivers also hold down a full-time job and care for other family members, so burnout is all too common. Family caregivers also experience feelings of stress, depression, guilt, and isolation, along with declining physical health.
At the same time, some patients nearing the end of life worry that they are a burden to their family caregiver. Help from hospice can relieve such concerns and reduce the caregiver burden in significant ways.
Caregiver support includes counseling, respite care, and practical assistance from aides and volunteers, with such tasks as grocery shopping, transportation, helping out around the home, and with pets, for instance. Staff coordinates supply and delivery of medical equipment and pharmacy services. As needed, hospice can also provide financial assistance and arrange community resources for additional respite care and other help. Providing expert emotional and spiritual support during the loved one’s last days can also ease feelings of grief. Ultimately, a longer hospice stay provides months of support and relief that families may have yearned for ever since their loved one became seriously ill.
More Time = More Room for What Matters…for Both of You
With the right care and support—especially over months, not weeks—patients and families are better able to focus on quality of life in the time remaining. Your hospice team will have a “goals of care” conversation to find out priorities including what you’d like to accomplish. That might include visits from family and friends, pursuing a favorite or new pastime, attending a wedding or graduation, or celebrating an important event such as an anniversary. A longer hospice stay also provides continuity of care, reducing the chances of trips to the emergency room or hospital, so time together is more predictable and enjoyable. The longer a loved one is in hospice care, with the focus on comfort and emotional well-being, the longer both can find and use time for what matters most.
More Time = A Better Life at the End-of-Life
Enrolling in hospice care early helps patients live better and live longer, as they receive an extended period of relief from pain and other debilitating symptoms, along with ongoing emotional and spiritual support. Plus, being at home, spending time with family and friends, and being able to talk to a social worker or chaplain may just make tomorrow look brighter. All this attention, care, and compassion helps hospice patients feel better. And sometimes, that can translate into a longer life. In one study, patients with congestive heart failure and certain cancers lived an average of 29 days longer than expected.
Capital Care Health = Meeting You Where You Are
CCH believes knowing more about the benefits of hospice and palliative care—including when to seek care—will make a difference to all families. Since our founding 45 years ago, we remain committed to a challenging but simple goal: to bring compassion, comfort, relief, peace of mind, and a better quality of life for both families and their loved ones, through the best hospice and palliative care. We’re here when you need us.
For more information, please view our extensive online resources or here and watch this video to learn more about when the time may be right to seek special care. For all your questions and for information about our services, please call our 24-hour care line at 800-737-2508. You may also use our online live chat feature.