The Numbered Letter
The pediatric palliative care numbered letter CCS NL 04-0207 was issued on February 14, 2007. We are encouraging healthcare providers to utilize this numbered letter as a tool for authorization of palliative care services currently available under the California state plan. All counties in California can use this numbered letter. It is not limited to waiver pilot counties. For your reference and to support its usage, we are gathering stories of successes and difficulties in accessing the services listed in the letter.
Please send us your stories of how you have used this letter so that we can share them here:
Here are some examples for review and discussion:
Numbered Letter 04-0207 Examples for Discussion
- Did NL 04-0207 help this child? If not, what went wrong? If yes, describe improved outcomes.
- Potential/successful avoided hospital admits:
- Potential/successful cost savings:
- Would this child qualify for the waiver once implemented?
- Other things to consider – solutions?
A.L. Diagnosis: Leighs Disease - 7 year-old female living at home with family (on hospice)
When discharged from hospital, seizure activity severe and prognosis grim. No purposeful movements, g-tube for feedings, and trach. 24 hour nursing needs. Completely dependent.
After much work and private insurance exhausted she received her Medi-Cal by being deemed institutional. Some shift care began but nursing was difficult to find through home health agencies. We contacted CCS through the use of the Numbered Letter to request authorization for CCS to pay for expensive seizure medications necessary for child but costly for hospice. CCS was very open and authorized payment. This has allowed child to remain at home from 10/07 until present. She has remained DNR and has had no further hospitalizations due to RX at home for things such as respiratory infection, or seizure difficulties.
She and her family have found comfort, symptom management, spiritual and family support since her hospice admission.
R.B. Diagnosis: anomalies of pulmonary artery and heart - 4 year old female (on hospice)
Severe cardiac mal function last treated at UCLA cardiac. Due to fragile condition this young child has lived much of her life in the NICU, PICU and CTICU. Her MD had end of life discussions with parents and they are fully aware that cures are not within reach. They have concluded that they want her to be at home and all she could do while in the hospital was to cry to “go home please.”
She has one expensive cardiac medication need that was way beyond hospice scope for palliative reasons. I called to the medical director of LA, Ed Block to discuss case and he approved CCS covering this med due to the Numbered Letter so that child could be home to die.
We will not be surprised if this child does not live beyond 3-6 months. This is an IV cardiac med provided by a CCS pharmacy outside TKC responsible meds provided by us. In the meantime, the mother has had a new baby and RB is loving getting to know her new brother, something she would probably never had experienced if not on home hospice.
A.S. 2yr with mitchondrial disorder, progressive neurodegenerative disease, seizure disorder Trached, GT, 16hr shift care, requires total care CCS declined PC nsg intervention because they consider his case ‘chronic and non-life-threatening’
J.M. 8yr old with pyruvate dehydrogenase deficiency, seiz d/o,
GT 16hr shift care, requires total care CCS declined PC nsg intervention because they consider her case ‘CP and chronic, non-life-threatening’
J.D. 5yr old with inoperable brain tumor, trached, vent dependent with blind parents
24hr shift care, required total care MediCal/CCS paid for PC nsg and SW visits and EOL visit + 1 bereavement visit (citing NL)
J M. is a 5 year old boy with Tay Sachs. JM’s older brother died of Tay Sachs at the age of 21 months. JM’s mother received the diagnosis prenatally and has been preparing for his death for 5 years.
JM’s parents are divorced and his mother has primary custody. She also has a healthy 7 year old son. JM’s father resides about 6 hours away. JM’s mother works full time and is the only source of income for the family.
Pediatric Home Health/Palliative Care Team received a referral for palliative care from JM’s CCS paneled pediatrician in January 2007. Prior to this in December 2006 JM’s Mother applied for IHO through CCS and was denied. In March 2007 Regional Center asked CCS to re-evaluate the IHO. IHO was approved March 8, 2007 (reversed the December 2006 ruling). On March 9, 2007 CCS authorized 90 days of Palliative Care with St. Joseph Home Health/Palliative Care Team retroactive to January 17, 2007. CCS reported that this authorization would end March 23, 2007. CCS later extended the authorization through April 16, 2007. On April 12, 2007 CCS approved 40 hours a week of shift care through the IHO. In April, St. Joseph Home Health Palliative care submitted authorization to continue care, it was denied. The reason given was “duplication of services” because the patient was receiving 40 hours a week of IHO.
We appealed using the CCS Numbered Letter (NL 04-0207). The case went to Medical Review and was denied for “duplication of services”. I began exploring with CCS County why JM’s palliative care was being denied. The local CCS office was unclear re: what palliative care is and the services being provided. They did not seed the distinction between an LVN shift care nurse and an interdisciplinary palliative care team. They had not considered time of death for this patient and who would be providing the care at time of death. They lacked knowledge re: implementation of the CCS numbered letter for Palliative care, however, they were very cooperative and eager to learn and assist this family.
From the child’s Social Worker - Outcomes/Points to consider:
- The LVN providing the shift care was documenting that she was providing palliative care. However, an LVN is not licensed to assess pain and has no training in pain and symptom management. The LVN, under her scope of practice, was not able to perform the tasks that the Palliative care RN was performing: assessment, lab draws, pain and symptom management, teaching. The shift care LVN was really looking to the Palliative Care RN for direction and care planning. In addition, the Palliative Care Social Worker was providing services that the shift care LVN was not able to provide: counseling, education, assistance with end of life care decision making, resource and referral, preparing family for patient’s death. CCS was open to continuing to authorize the Social Worker but not the nurse. CCS lacked knowledge re: the Home Health regulation that requires an RN, PT, ST or OT to open a case and provide care in order for a Home Health Social Worker to be involved.
- Since the Palliative Care RN stopped providing care, JM began having more seizures, more pain, more constipation. The patient’s CCS paneled Pediatrician re-submitted an order for Palliative Care and it was denied again.
- The hospital recognized the gap in this little boy’s care and agreed to pay for Palliative Care until we could resolve the issue with CCS.
- The plan of care for traditional home health does not adequately describe what services are being provided under palliative care. I individualized JM’s plan of care by combining the traditional home health plan of care and the hospice plan of care.
- The plan of care is KEY to the success of this waiver.
- CCS does not understand home health, hospice, palliative care and the regulations. It would be beneficial to provide education to CCS case workers. Once they understand what it is palliative care/hospice care provides they will see that this is not duplication of services with IHO