Palliative care helps families such as the Ransoms, of North Canton, navigate the resources that are available for children with special needs. In addition to cleft palate, Lucas has had several serious problems unrelated to his prematurity that make his condition critical.
November is National Hospice and Palliative Care Month
Dr. Sarah Friebert
Many people are now more familiar with the words palliative care and hospice, but there’s often confusion about what they are and how they’re different. In honor of this month, which celebrates and spreads awareness about hospice and palliative care, we’ve created this Q & A.
When is it appropriate to use palliative care?
Most people think that palliative and hospice care are reserved for end-of-life, but palliative care actually is most effective if it’s made available as soon as a serious or life-threatening illness is diagnosed. In fact, palliative care is appropriate at any stage of the illness.
Our palliative care team at Akron Children’s prefers to be involved as early as possible. This is helpful for many reasons. It allows us to get to know the patient and family, and be better aware of their goals and wishes throughout the illness. If many different specialists are involved, we can help coordinate and communicate.
We are available 24/7 to aid with distressing symptoms and for emotional, spiritual and social support. Patients do not have to stop curative treatments if they are also being seen by palliative care.
Logan Keith of Akron shares a fun moment with his mom, Laura. Logan is a patient in the Haslinger Family Pediatric Palliative Care Center. He continues to amaze his doctors and his family with his recovery from a devastating brain injury.
When should hospice be used?
Hospice is also a philosophy of care geared toward life-threatening illness. The difference is that hospice is reserved for patients who are expected to live 6 months or less (if the disease follows its normal or expected course) and have stopped or lessened curative treatment.
Often patients will live longer than 6 months, in which case they can be recertified to continue hospice, if appropriate. Sometimes the course of their illness is not what was expected (which can be very difficult to predict, especially in children) and patients can go off hospice care for the time being. We have many patients who have “graduated” from hospice, because their health improved and they didn’t need it any longer.
Where does care occur?
Palliative care is delivered in many different settings – in the hospital, through outpatient appointments in our office and through visits to patients’ homes or nursing care facilities or group homes. Our palliative care team has no geographic boundaries – we are glad to provide assistance wherever needed.
Hospice care generally occurs in the patient’s home since that’s where patients and their families usually prefer to be. But hospice providers can also visit patients who are admitted to the hospital or another facility. While hospice is not the same as home nursing, hospice providers can come to the home for a visit weekly, daily or several days during the week.
Who provides care?
Our palliative care team has physicians, nurse practitioners, nurse case managers and social workers who see patients. Our team also has a dietitian, a chaplain, psychologist, child life specialist, massage therapist, expressive therapists (art, music and poetry), bereavement coordinator, volunteers and liaisons in physical and occupational therapy. We use a team approach to provide the best care for our patients and families.
Hospice care also has a team approach, but much of the care is provided by a core team of nurses, social workers, chaplains and volunteers.
Can someone receive palliative care and hospice at the same time?
Yes, many of our patients receive both palliative care and hospice. Akron Children’s Hospital doesn’t have its own hospice, so our palliative care team collaborates with hospices where the patients live to provide care.
Dr. Hirsh and I also serve as medical directors for one particular hospice, so we provide medical oversight for their patients and attend their team meetings to get updates on patients we share. We have worked with many other hospices as well, and we always remain the doctors of record for our patients when they’re enrolled in hospice.
How does someone start receiving palliative care or hospice?
Referrals are generally made by a patient’s primary care physician or a specialist, but families can also request a palliative care consult or self-refer to hospice. Since we will be working with a patient’s other providers, generally we recommend discussing with one of them first.
A physician referral is needed to enroll in hospice care. Ideally the patient is already a palliative care patient, and the palliative care team can help identify when hospice care would be appropriate and help the patient get enrolled.
For patients not already involved with palliative care, we recommend discussing this option with one of the child’s physicians to start the process.
Are palliative care and hospice available everywhere?
It is now standard for all hospitals to have some palliative care available, but much depends on the size of the palliative care team in place and the level of training. Some may be only be able to provide services to inpatients. They may not have the depth to do home visits or outpatient visits.
Outside the hospital, many areas will have one or more hospices available. In more remote areas, providers may not be able to visit as frequently, and there may not be pediatric expertise at the local hospice.
Patients and families who need these services should make sure to discuss them with their other providers. Not all providers are aware of the benefits of palliative care and hospice, so patients and families will sometimes have to advocate for themselves.
We are very fortunate here at Akron Children’s Hospital to have one of the largest palliative care programs in the country, and we are able to provide in-depth care to a large number of patients and their families in the Akron area and throughout the state.
For more information about our program and the services offered, visit akronchlidrens.org/palliativecare.
Facebook Comments