Despite more partnerships, some patients being missed
Hospice-ineligibles fall through the cracks
With the growth of hospice-hospital partnerships, it may seem as if the solution for caring for hospice-ineligible patients who need palliative care is at hand. But while hospitals and hospices are coming up with innovative models to deal with inpatient palliative care, hospices acting alone are still struggling with reaching people either ineligible for hospice care or not being treated in a hospital.
The question is: What can hospices do to serve these people who need palliative care services even more than those who are in hospitals?
Hospice of the Bluegrass in Louisville, KY, the largest hospice in the state, is like a number of large hospices around the country that have partnered with local hospitals to provide inpatient palliative care.
Yet, its mission to reach all of those who need care goes beyond hospice-eligible populations and hospital palliative care centers. Hospice of the Bluegrass also operates a palliative care clinic that resembles a medical office. Patients in need of palliative care can go to the hospice’s Palliative Care Center for pain management and other services.
"Pain is the biggest reason people come to the clinic," says Gretchen Brown, president and chief executive officer of Hospice of the Bluegrass.
An outpatient clinic is an appropriate setting for cancer patients who are undergoing treatment, patients battling chronic diseases, people with terminal illnesses but who are unwilling to enter into hospice care, and those who need pain management after cancer strikes. According to Brown, about one-third of those who use the outpatient clinic eventually invoke their hospice benefit.
Yet for the benefit it brings to those who need palliative care but who are not eligible for hospice care, there is a measure of folly. The Hospice of the Bluegrass operates its clinic at a financial loss, subsidizing the shortfall with community donations.
Brown says the reason outpatient palliative care clinics are losing money is that staffing them requires experienced professionals whose services are not reimbursable in an outpatient setting.
The average cost per visit in the clinic is about $115, says Susan Swinford, MSW, vice president of administration for Hospice of the Bluegrass. But 60% of those visits yield less than $100 in revenue, and nearly 30% bring as little as $78.
With the financial loss almost a foregone conclusion, the question becomes: Why do it at all? "Our mission is to help everyone that can benefit from our care," Brown answers.
With that said, however, Brown acknowledges that because of the financial burden, an outpatient palliative care clinic is not for every hospice. "Some of us are experimenting with it because we can afford to," Brown says. "We’re a large hospice. Can every hospice do this? If it means having to cut its bereavement programs, I don’t think they can."
In January, Last Acts, a Robert Wood Johnson Foundation-supported coalition of end-of-life care improvement advocates, featured non-Medicare certified hospices as a possible solution to caring for those who do not have a six-month terminal diagnosis.
In an article that appeared on its web site (www.lastacts.org), Last Acts focused on Hospice of the Wood River Valley in Ketchum, ID, which is financed entirely through donations. Without Medicare’s hospice-benefit certification, Hospice of the Wood River Valley is able to provide care without concern for Medicare’s six-month benefit limit, which allows the hospice to offer palliative care to patients while they are receiving curative treatments.
"We don’t need to be uptight about whether patients are ready for hospice," says Carolyn Nystrom, RN, from the Hospice of the Wood River Valley. "So doctors can say to a patient, At this stage, you could benefit from hospice care,’ without feeling like they’re dispensing a death sentence."
Of course, this means having to focus more organizational energy on fundraising. Memorial donations are an ongoing source of funding in the hospice’s $230,000 annual budget, and the hospice conducts a yearly direct mail campaign for more contributions. The donations, Nystrom says, come mostly from small donors rather than large, corporate donors.
In addition, the hospice also has local resources that have offered to provide emergency funds, and the hospice has a small endowment fund that officials hope will one day grow large enough to support the hospice’s annual efforts. The hospice also receives an annual $20,000 grant from St. Luke’s Wood River Medical Center Foundation.
Outpatient clinics and non-Medicare-dependent hospices are rarities in the industry, so reaching hospice-ineligible patients on a broad basis remains the next frontier. This is a frontier that Hospice of the Bluegrass leaders hope to cross soon, although they accept that, like their outpatient clinic, an in-home palliative care program would end up costing more money that it can generate.
Aside from pain management, social services will likely be a key component of in-home palliative care programs. The caregiver often is left feeling isolated and overwhelmed. So it stands to reason that one way to ensure quality care in the absence of regular visits by hospice staff is to teach loved ones how to be better caregivers.
Given that family members play such a pivotal role in caring for the dying patient, hospice staff need to attend not only to the needs of the patient, but to the needs of the caregiver as well. Caregivers do need to be taught the mechanics of caring for a loved one — how to give a bed bath or monitor instruments, for example — but hospices also should help caregivers recognize their own needs and limitations. The better educated the family is, the better the care the patient will receive.
Hospices should focus on the following areas to help family members become better caregivers:
- physical concerns;
- emotional needs;
- role and relationship of caregiver in the family structure;
- spiritual concerns;
- understanding the dying process.
Physical concerns
A focus on pain management will go a long way toward improving the quality of the remaining days of a patient’s life. While hospice workers understand this philosophy, family members and caregivers may not. Often they are reluctant to administer pain medication for fear of overdosing the patient or getting the patient addicted to the medication.
Hospice staff need to help caregivers accept that pain is a reality in their loved one’s life and that pain medication is designed to improve the quality of the life that remains. Further, staff must stress the importance of keeping up with scheduled medications to avoid causing undue pain to the patient.
As staff train caregivers in how to administer the medication, caregivers should also be told about possible side effects of the medications being used to avoid surprises that could result in noncompliance or misuse.
Staff also must be aware of the caregivers’ physical concerns. A common concern is whether the caregiver is getting enough rest due to the round-the-clock duties of caring for the patient and tending to other household responsibilities. It is often easy for staff to focus primarily on the patient and miss the warning signs of a caregiver in need of care.
The best way to keep on top of caregivers’ needs is to establish a rapport with them, keeping lines of communication open and showing concern for them as well as for the patient.
Emotional needs
One caregiver role is to help a loved one accept that he or she has a terminal illness. Patients often deny they are sick and avoid necessary medicines and treatments that negatively impact their quality of life.
A caregiver also must be able to nurture loved ones by allowing them to share their feelings about their situation, including their fears about leaving loved ones behind. In order to do so, caregivers must be able to discern the proper times to elicit open conversation and avoid communicating through heated arguments.
As patients are faced with their mortality, they begin to inventory life’s unfinished business, activities they have always wanted to do, or broken relationships they have long wanted to mend. Caregivers should play a major role in improving their loved one’s life by helping to tie up these loose ends.
But caregivers cannot attend to the above tasks if they are not on a solid emotional foundation themselves. So, in order to empower caregivers to be supportive and attentive to the needs of the patient, hospice staff need to attend to the emotional needs of the caregiver.
This begins by assessing the caregiver’s ability to cope. It is common for caregivers’ coping abilities to be degraded by the knowledge of a loved one’s terminal illness. Staff should assess the caregiver’s knowledge of the disease. The ensuing discussion will likely yield insight into the fears and expectations of the caregiver and offer signs of anxiety and depression that must be dealt with.
Roles and relationships
Emotional needs are affected in part by the roles and relationships caregivers and patients play in the family structure both before and after the diagnosis. For example, what seems like denial may be the patient’s attempt to protect a loved one from what is really happening. The caregiver needs to be able to reassure the patient that the caregiver is willing to hear and talk about all aspects of the illness, despite how difficult it may be for both parties. This should help the patient get past this form of protection and allow the patient to prepare for his or her own death.
What often triggers fear and anxiety in dying patients is the thought of leaving behind a spouse or family that is unprepared to carry on after the patient dies. An elderly man who handles the family finances could fear that his wife will founder financially, or an elderly woman who prepared all the family meals may be concerned that her husband will starve with no one to cook for him.
For both sides to gain peace, there needs to be a dialogue that staff can facilitate. Both caregiver and patient need to be able to tell each other about their fears. If, for example, the issue is self-sufficiency of the survivor, then the hospice staff should help both sides address their concerns. If the wife fears her husband will not be able to prepare his own meals, the hospice worker should work with the husband to devise a plan that will ultimately improve his cooking skills, which should be demonstrated to his wife.
Professional caregivers must also help family caregivers work through important family issues. Patient and caregiver, for example, may disagree on issues such as when and how to share their feelings. Hospice workers can help facilitate the resolution of outstanding issues by:
• Getting caregivers to explain their needs openly.
Caregivers need to be taught that their feelings and needs matter and that they should feel as if they can ask the patient to do something that will make their lives easier or their caregiving responsibilities more manageable. For example, it is not unreasonable for a caregiver to ask a loved one to give notice when any pain arises rather than waiting until it becomes so severe that it creates a conflict between caregiver and patient.
Teach caregivers that conflict resolution does not always mean that everybody is happy. Remind them that conflicts are resolved through compromise, a fact they may have forgotten under the strain of dealing with a terminal illness.
• Emphasize to the caregiver that the patient should make as many of his or her own decisions as possible.
A good example of letting a patient make his or her own decisions is when adult children living some distance away from the patient want to move him or her into a nursing home. Although a move to a nursing home may make the adult children feel at ease, it may not be what the patient wants. If the patient understands the consequences of his or her decision to remain at home, including the absence of a caregiver at home, the children should accept the patient’s right to make that decision. Family members need to be told that taking away their loved one’s ability to make decisions can undermine his or her feelings of control, which can interfere with the person’s ability to deal with other aspects of his or her illness.
Spiritual concerns
Another source of conflict can be unattended spiritual needs. Patients are not always forthcoming with their questions about matters of faith or their place in the universe. Hospice workers are trained in trying to get patients to express their spiritual needs, but often it is the caregiver who prompts the discussion that leads to the patient seeking the help of a hospice chaplain or their own clergy.
The first step in meeting patients’ spiritual needs is training caregivers in what spirituality is, given its very broad definition. In some cases, the caregiver may be deeply religious while the patient is not. Hospice caregivers need to train family caregivers in what spiritual care actually is, including that it does not necessarily involve organized religion.
Teach caregivers to share not just their faith with their loved ones, but their uncertainties, as well. This will help them understand their own relationship with those around them and with a higher being, and possibly help them reconnect with beliefs they held before their illness, says Elizabeth Pitorak, MSN, RN, CRNH, director of the Institute of Hospice of the Western Reserve in Cleveland and president of the Pittsburgh-based Hospice and Palliative Nurses Association.
Teach caregivers that listening is the most important thing they can do to help, including letting the patient know that the caregiver is willing to discuss spiritual matters when the patient is ready. Help the caregiver understand his or her limitations. If the caregiver finds it difficult to listen to the patient’s concerns, then the caregiver needs to be able to call the hospice chaplain or another clergyperson to help the patient work through his or her spiritual concerns.
Hospice workers need to be concerned about the spiritual needs of the caregiver, as well. Caring for a loved one who is dying often brings up very difficult issues, including questions about fairness, fear about the future, and other universal questions.
Just as the caregiver tries be available, so should hospice workers. While this is not a new concept, Pitorak says with the emphasis placed on the patient, it is easy to forget about the needs of the caregiver. And without addressing the caregiver’s needs, the caregiver will have difficulty helping the patient to sort out through his or her spiritual concerns.
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