Building a Meaningful Continuum of Care

Hospice and palliative care, they go hand in hand, to paraphrase swing master Louis Jordan. These two labels for models of care that target the relief of suffering and the human needs of patients with serious, life-threatening or terminal illnesses increasingly get uttered in the same mouthful. Just look at the names of the National Hospice and Palliative Care Organization, state providers' associations and numerous local retailers of end-of-life care.

But what does that mouthful really mean? Is this essentially one broad type of health care that spans settings, reimbursement streams and stages of illness? Are hospice and palliative care alternatives to each other, competitors or closely linked neighbors on the continuum of care? If partners on the care continuum, are they cooperating in a way that maximizes access and the reach of each partner?

Some established hospice programs have viewed palliative care development with alarm and suspicion, although this perspective is becoming less common. Palliative care advocates have highlighted the problems of hospice-short lengths of stay, physicians' reluctance to give their patients informed referrals to hospice, patients' reluctance to accept such a referral, regulatory and eligibility barriers, the "terrible choice" that patients sometimes must make between hospice care and cure-oriented treatment. At the same time, a palliative care service isn't going to meet the full range of its patients' needs if it does not have ready access to a hospice program when that level of care becomes timely.

Note that most of the criticisms of hospice have to do with barriers and with consumers not being able to take advantage of this "gold standard" of end-of-life care, rather than specific complaints about the quality or value of the service for those who obtain it. As someone who has written most often about hospice but also about its cousin, palliative care, I am an unashamed advocate for the hospice concept and its ability to work miracles in the lives of dying patients and their loved ones.

Yet I understand there are many other patients who struggle with the demands of serious illness, suffering imposed by untreated symptoms or harsh treatments, fears about their changing health status and confusion about their medical treatment. Many of those people could benefit from hospice's specialized skills but are unable to enroll in hospice care because of emotional barriers, lack of knowledge, lack of referral, lack of eligibility and hurdles imposed by hospices themselves.

This could be a partnership made in heaven between hospice, the most intensive form of palliative care, and the emerging new models of palliative care that are extending this kind of care to more patients much sooner. It could be a seamless continuum of care, but again, what does that mean?

Continuums of Mistrust

At a recent hospice conference, I met a quality improvement nurse from a health system-based hospice program who had been given the assignment of liaison to a palliative care service recently launched within an affiliated hospital. She had learned the buzzwords "seamless continuum of care" and understood that it was her responsibility to try to build one. But there was a lot of suspicion between the two programs, not much mutual understanding and little meaningful collaboration at the personal level.

"It sounds like where you need to start is by building close personal relationships between hospice and palliative care staff," I said to her. "How can you act more like a single team? Have you thought of planning a joint picnic or other team-building activity?" She suddenly stiffened, as if in horror.

Hospice professionals, I knew, were well-versed in the techniques of team building: support groups, pot lucks, boat rides, bowling nights. But for this hospice nurse, pursuing such trust-building activities with palliative care, well, that was beyond the pale.

Don't misunderstand my sympathies. I am sure the palliative care service was equality reluctant to initiate friendly continuum-building, just as suspicious of the intentions of those hospice people who work out there in the community. Did they understand the regulations under which hospice must operate and the ways that skilled hospice professionals have learned to successfully navigate those rules? Had they bothered to learn the first names of hospice staff with whom they should have been interacting-and their children's names?

I would suggest that building the continuum of end-of-life care is an act of team-building and relationship-building that involves both hospice and palliative care teams. They should see each other as a single team, regardless of their respective corporate or ownership auspices, fully cognizant of the different coverage rules each operates under, but with patients' and families' actual needs driving the joint team's efforts.

Opportunities for Partnering

I would add a few other observations to this realm of hospital-hospice interaction and continuum building. It seems unlikely that the development of a palliative care service in the hospital would have negative effects on local hospices' caseloads or lengths of stay. Anecdotal evidence suggests that the opposite outcome is more likely. Hospitals in present-day America are not going to hold onto terminally ill patients who could be discharged, because their reimbursement pressures would not permit it.

The presence of a palliative care service doesn't impede hospice referrals-even though physicians and patients may still resist them. More often, it will encourage patients and families to consider and discuss their goals of care, how to plan for undesired contingencies, and their hopes as the patient's physical condition deteriorates.

At the same time, if a palliative care service is serious about meeting the care needs of seriously ill patients, many of those patients eventually will need hospice care. Whatever can be done to build relationships and ease referral barriers will be a win-win situation for the palliative care service, the hospice and the patient. All of which will make a hospice referral more likely when that becomes appropriate.

Any meaningful relationship is two-sided and mutual. For hospices and palliative care services to start to build tighter bonds as members of the same seamless care continuum, either party can originate a friendly contact, but both sides must be willing to get together. The weather might not be cooperative this week, but come spring, I highly recommend a joint picnic. I'd be happy to offer my potato salad recipe.

Contact end-of-life writer Larry Beresford at: larryberesford@hotmail.com