Measure Description
Percentage of patients diagnosed with Amyotrophic Lateral Sclerosis (ALS) who were offered assistance in planning for end of life issues (e.g., advance directives, invasive ventilation, lawful physician-hastened death, or hospice) or whose existing end of life plan was reviewed or updated at least once annually or more frequently as clinically indicated (i.e., rapid progression).
Instructions
This measure is to be submitted a minimum of once per performance period for patients with a diagnosis of ALS during the performance period. This measure may be submitted by Merit-based Incentive Payment System (MIPS) eligible clinicians who perform the quality actions described in the measure based on the services provided and the measure-specific denominator coding. This measure is appropriate for use in outpatient and long term care (e.g., nursing home, ambulatory). For each of these settings, there should be documentation in the medical record(s) that advance care planning was discussed or documented.
NOTE: Patient encounters for this measure conducted via telehealth (including but not limited to encounters coded with GQ, GT, 95, POS 02, POS 10) are allowable.
Measure Submission Type:
Measure data may be submitted by individual MIPS eligible clinicians, groups, or third-party intermediaries. The listed denominator criteria are used to identify the intended patient population. The numerator options included in this specification are used to submit the quality actions as allowed by the measure. The quality data codes listed do not need to be submitted by MIPS eligible clinicians, groups, or third-party intermediaries that utilize this modality for submissions; however, these codes may be submitted for those third-party intermediaries that utilize Medicare Part B claims data. For more information regarding Application Programming Interface (API), please refer to the Quality Payment Program (QPP) website.
Denominator
All patients with a diagnosis of Amyotrophic Lateral Sclerosis (ALS)
Denominator Criteria (Eligible Cases):
Diagnosis for Amyotrophic Lateral Sclerosis (ICD-10-CM): G12.21, G12.22, G12.23, G12.24, G12.25
AND
Patient encounter during the performance period (CPT): 99202, 99203, 99204, 99205, 99211, 99212, 99213, 99214, 99215, 99242*, 99243*, 99244*, 99245*, 99304, 99305, 99306, 99307, 99308, 99309, 99310, 99341, 99342, 99344, 99345, 99347, 99348, 99349, 99350, 99421, 99422, 99423, 99441, 99442, 99443, 99483
AND NOT
DENOMINATOR EXCLUSION:
Patient in hospice at any time during the measurement period: G9758
Numerator
Patients who were offered assistance in planning for end of life issues or whose existing end of life plan was reviewed or updated at least once annually or more frequently as clinically indicated (i.e., rapid progression)
Definition:
Assistance with end of life issues – assessment of patient concerns, desires and needs relating to end of life issues. Based on patient’s disease progression this may include discussions regarding invasive ventilation, advance directives, lawful physician hastened death, or hospice.
Numerator Options:
Performance Met: Patient offered assistance with end of life issues or existing end of life plan was reviewed or updated during the measurement period (G9380)
OR
Performance Not Met: Patient not offered assistance with end of life issues or existing end of life plan was not reviewed or updated during the measurement period (G9382)
Rationale
Since it was released in 2013, the quality measure has been adopted by the Centers for Medicare & Medicaid Services in their Quality Payment Program. The measure has not been identified as topped-out. The measure was also implemented in the American Academy of Neurology Institute’s (AANI) Axon Registry®, and review of average performance scores indicated a continued gap in care: the 2018 average performance, excluding zero denominator from 8 clinicians, was 53.59%; the 2019 average performance, excluding zero denominator from 149 clinicians, was 48.8%; and the 2020 average performance, excluding zero denominator from 105 clinicians, was 73.92%. Evidence supports there is a continued gap to address for inpatient and outpatient clinicians.1-5
Clinical practice guidelines continue to stress the importance of end of life planning for patients with ALS and their care partners, but guidelines for discussions about end-of-life care for patients with ALS have not been published.1,6,7 In 2022, the AANI released a position statement, Clinical Guidance in Neuropalliative Care, that encourages clinicians to engage in neuropalliative planning at an early stage, given the poor prognosis and likelihood of difficulty expressing a desire to shift the focus of care as the disease progresses.8
References:
1. Genuis SK, Luth W, Campbell S, et al. Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence. Front Neurol. 2021;12:683197.
2. Mehta AK, Jackson NJ, Wiedau-Pazos M. Palliative Care Consults in an Inpatient Setting for Patients With Amyotrophic Lateral Sclerosis. Am J Hosp Palliat Care. 2021;38(9):1091-1098.
3. Hafer J, Jensen S, Wiedau-Pazos M, et al. Assessment of feasibility and utility of universal referral to specialty palliative care in a multidisciplinary amyotrophic lateral sclerosis clinic: A cohort study. Muscle Nerve. 2021;63(6):818-823.
4. Phillips JN, Besbris J, Foster LA, et al. Models of outpatient neuropalliative care for patients with amyotrophic lateral sclerosis. Neurology. 2020:95:782–788.
5. Mehta TR, Bayat E, Govindarajan R. Palliative care in amyotrophic lateral sclerosis clinics: A survey of NEALS consortium membership. Muscle Nerve. 2021;63(5):769-774.
6. National Institute for Health and Care Excellence. (NICE) Motor neurone disease: assessment and management. NICE guideline NG 42. Published: February 24, 2016. Last updated: July 23, 2019. Available at https://www.nice.org.uk/guidance/NG42. Accessed on August 18, 2021.
7. Miller RG, Jackson CE, Kasarskis EJ, et al. Practice Parameter Update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology 2009;73(15):1218-1226.
8. Taylor LP, Besbris JM, Graf WD, et al. on behalf of the Ethics, Law, and Humanities Committee. Clinical Guidance in Neuropalliative Care: An AAN Position Statement. Neurology. 2022; 98(10) 409-416.
Clinical Recommendation Statements
- Be prepared to discuss end of life issues whenever people wish to do so.
- Provide support and advice on advance care planning for end of life. Topics to discuss may include:
- What could happen at the end of life, for example, how death may occur
- Providing anticipatory medicines in the home
- Advance care planning, including Advance Decisions to Refuse Treatment (ADRT) and Do Not Attempt Resuscitation (DNACPR) orders, and Lasting Power of Attorney
- How to ensure advance care plans will be available when needed, for example, including the information on the person’s Summary Care Record. o When to involve specialist palliative care.
- Areas that people might wish to plan for, such as:
- What they want to happen (for example, their preferred place of death)
- What they do not want to happen (for example, being admitted to hospital)
- Who will represent their decisions, if necessary
- What should happen if they develop an intercurrent illness.
- Think about discussing advance care planning with people at an earlier opportunity if you expect their communication ability, cognitive status or mental capacity to get worse.
- Offer people the opportunity to talk about, and review any existing ADRT, DNACPR orders and Lasting Power of Attorney when interventions such as gastrostomy and non-invasive ventilation are planned.
- Provide additional support as the end of life approaches, for example, additional social or nursing care to enable informal carers and family to reduce their carer responsibilities and spend time with the person with MND [motor neuron disease].
- Towards the end of life ensure there is prompt access to the following, if not already provided:
- A method of communication that meets the person’s needs, such as an AAC system.
- Specialist palliative care.
- Equipment, if needed, such as syringe drivers, suction machines, riser-recliner chair, hospital bed, commode and hoist.
- Anticipatory medicines, including opioids and benzodiazepines to treat breathlessness, and antimuscarinic medicines to treat problematic saliva and respiratory secretions.
Reference:
1. National Institute for Health and Care Excellence. (NICE) Motor neurone disease: assessment and management. NICE guideline NG 42. Published: February 24, 2016. Last updated: July 23, 2019. Available at https://www.nice.org.uk/guidance/NG42. Accessed on August 18, 2021.