Hospice and Assisted Living: Improving Care at the End of Life

Cherry Meier, RN, MSN

eniors have embraced the concept of “aging in place.” S The challenge that inevitably occurs is the concept of “dying in place.” Seniors do not want to go through another change in living arrangements and do not want to become a burden on their families at the end of their life. Is it realistic to think that an eld- erly resident may be able to die in an assisted living (AL) residence? Depending upon what state you live in, it may or may not be possible. Some states have very strict move-in and discharge requirements that prohibit a dying resident from staying in their AL residence because they become bedbound, have a foley catheter, or require oxygen. Such requirements are usu- ally in response to concerns for life and safety in the event that a build- ing needs to be evacuated quickly or that the resident has complex 6 months or less if the illness runs equipment, and medical supplies needs that cannot be met by the AL its normal course and elects to re- related to the terminal illness. staff. Other states waive these rules ceive palliative/comfort care instead • On-call services, 24 hours a day. for residents who elect to receive of curative care. The AL residence • Bereavement care to the family/ care from hospice. is considered to be the resident’s loved ones following the death home, where the following services of the resident. The Medicare Hospice Benefit can be provided: The Medicare Hospice Benefit is • Services by an interdisciplinary The goal of care is to control the available to Medicare and Medicaid health care team comprised of resident’s pain and other uncomfort- beneficiaries in all states, except physicians, nurses, home health able symptoms through the dying Oklahoma, New Hampshire, and aides, social workers, chaplains, process. Once their symptoms are Connecticut. To qualify, the resi- and volunteers. controlled, support is provided in dent must have a prognosis of • Medications, durable medical addressing spiritual/psychosocial

24 Assisted Living Consult July/August 2006 issues if the resident so desires. Hospice providers, for short crisis Figure 1. periods, will be able to offer care in their hospice inpatient unit or through contracts with hospitals and skilled nursing facilities. Some hos- pices may be able to offer continuous care at the bedside when the resident does not want to be hospitalized. If the resident’s needs cannot be met through these means, alternative placement will need to be considered to ensure that he or she receives the care that is needed.

AL Expectations of Hospice Beyond the basic services that are offered under the Medicare Hospice Benefit, the services provided are dependent upon the staffing and policy/procedures of the hospice. In most states, although a contractual arrangement between the hospice and the AL residence is not required, it is important for these facilities to have a discussion to clarify expectations and outline how their relationship will work. An AL collaborative assessment/agreement form can form the basis of a productive discussion on this matter (Figure 1). For example, what in-service train- ing does the hospice offer the AL staff so that they will be comfortable with dying residents? How quickly does the hospice assess a resident who has been referred? Does the Sample assisted living collaborative assessment/agreement form that can be used to clarify hospice provide consistent staff to expectations and outline how the relationship between hospice and AL providers will work. make visits? Do the nurses commu- Form provided by Hospice of Metro Denver. nicate and coordinate the resident’s care in an effective manner? Does tive Care Organization (NHPCO) Hospice Expectations of AL the hospice staff respond promptly has recently made available a tool- Residences when called? Does the hospice staff kit entitled, Operational Guidance: Likewise, the hospice has expecta- make visits in the off hours? Is the Hospice and Assisted Living (Figure tions about the care provided by hospice staff able to assist the resi- 2). The toolkit offers valuable infor- the AL residence. Since hospice dent or family in making treatment mation that may assist hospice provides the services of the inter- decisions and completing advance providers in developing successful disciplinary health care team on an directives? Can the hospice provide collaborative arrangements with AL intermittent basis, someone will continuous care in the AL residence staff and includes guidelines on: need to provide the primary care when the resident does not want to • State licensing regulations services in assisting with activities be hospitalized? Does the hospice • Assisted living residences of daily living. This role can be as- provide bereavement support for • Assessment of the resident sumed by the AL staff, family, other residents and AL staff who friends, or sitters employed by the are grieving over the loss of the The toolkit can be purchased resident. resident? at a nominal fee by visiting: Hospice is most effective when The National Hospice and Pallia- www.nhpco.org. the resident is referred to the hospice

July/August 2006 Assisted Living Consult 25 earlier in their disease process as Does the AL staff have a current opposed to when he or she is in medication list? Who is responsible Hospice Care Facts the actively dying phase. Earlier re- for the administration of medica- and Figures ferral allows time to prepare the tions? Is there any special packaging resident, family, and friends as to required for the medications? Is what can be anticipated and attains trained staff available to administer 3,650 earlier control of symptoms. Every- medications or treatments during hospice programs nationwide one benefits. the middle of the night? Which in 2004 Some information that is helpful physician is going to be responsible in determining hospice expectations for writing orders? Who is on staff 3,100 of an AL residence and developing during the night in the residence? hospice programs nationwide a collaborative relationship includes Who should the hospice staff con- in 2000 an assessment of what services tact if there is a medical emergency? the AL facility can provide and what level of care the resident needs. Coordination and 1,060,000 Communication patients sought hospice care Extensive coordination and commu- in 2004 Figure 2. nication are required from providers, the resident, and his or her 700,000 family to ensure that there are no patients sought hospice care gaps in care. Some states require in 2000 AL providers to inform the regulatory agency when an individual re- 63% quires hospice services. This re- of hospice programs in 2004 quirement is being met through were non-profit, down from applications for waivers or filing an 67% in 2003 agreement for care that has been developed by the hospice and AL 6% providers. The intent is to ensure of hospice programs in 2004 that the needs of the resident have were government-run, up from been assessed and that a plan des- 4% in 2003 ignates responsible parties to ensure that appropriate care is provided. These arrangements are means 33.3% of hospice patients are 85 years Developed by the National Hospice and by which the state agency holds Palliative Care Organization (NHPCO), providers accountable for the out- of age or older Operational Guidance: Hospice and Assisted comes of care. Living, is a toolkit for hospice and AL Working together, hospice and 35.3% providers to assist them in developing successful collaborative arrangements. AL providers have the opportunity of hospice patients are under The toolkit is available at: www.nhpco.org. of affording quality end-of-life care the age of 75 to residents who would otherwise Source: National Hospice and Palliative Care be required to seek alternative Organization’s 2004 Facts and Figures. Again, an AL collaborative assess- placement. This opportunity is ac- ment/agreement form is useful in companied by a great responsibility. gaining this information (Figure 1). At this time, AL providers have not my, independence, and quality of What services are offered to all resi- been burdened with the regulatory life. It will take mutual collaboration dents? Has the hospice resident pur- oversight that skilled nursing facility and work from all parties to make chased any additional services from providers have been subjected to. these goals possible. ALC the AL facility? What services and However, if there are significant when are they provided by the AL service failures, more intense state Cherry Meier is the Senior Director of facility? What is the AL facility poli- regulations and potential federal Public Affairs of VITAS Innovative Hos- cy on the handling of narcotics? regulations may be enacted. Regula- pice Care®, the nation’s largest and Does there need to be a physician- tions have the potential of eroding leading provider of end-of-life care, specific order for the administration the philosophy of AL service deliv- and the Nationanl Hospice and Pallia- of the medication or can it be or- ery, which is designed to maximize tive Care Organization (NHPCO) Long- dered on an as-needed basis PRN? individual choice, dignity, autono- term Care Manager.

26 Assisted Living Consult July/August 2006