Initiating a hospice discussion
It’s not a comfortable discussion, telling a patient and their family that a cure is unlikely. But there are compassionate ways to do it that ease the shock and assure the patient that you are committed to their care. Dr. David Casarett, a fellow at the Institute on Aging and a professor at the University of Pennsylvania School of Medicine, has outlined a structured discussion framework, paraphrased below, for introducing hospice and the shift to a palliative-only approach.
Everyone needs a sense of hope
If a cure is not possible, that does not mean that the patient must be stripped of all hopes. It simply means that they need assistance in focusing on realistically achievable goals.
In particular, it is recommended that physicians ascertain the patient and family’s understanding of the disease severity and prognosis. If there is a discrepancy between their understanding and yours, a conversation about patient goals (medical and otherwise) as well as patient hopes and fears can provide information that can lead to an empathetic delivery of bad news.
For instance, a patient’s medical hopes might include at least a partial recovery, with non-medical hopes topped by a desire to see her granddaughter graduate from high school two months off. Fears might include concerns about pain and an intense dislike of the hospital. The physician could then initiate a shift-to-palliative-care discussion by beginning with a “wish statement”:
“I wish we could promise you a cure, but I’m afraid that is not likely. What we can do, however, is help you with your stamina so that you could enjoy your granddaughter’s graduation. That’s a very achievable goal. I also want to assure you that we can keep your pain at bay and that there are free services that can help you to remain at home if your desire is to stay out of the hospital…”
Certainly it will take time to emotionally process the shift from curative to a palliative-only approach, which it why it is advisable to have these discussions sooner rather than later. Professional opinion and several studies indicate that patients and families appear to receive optimal service benefit and express maximum satisfaction when they have received palliative care and the support of hospice for 30-90 days before the death (Emanuel, von Guten and Ferris, 2000; Lynn, 2001; McCarthy, Burns, Ngo-Metzger, Davis and Phillips, 2003; Rickerson, Harold, Kapo, Caroll and Casarett, 2005; Teno and colleagues, 2004).
Through a focus on achievable goals, you can begin the move away from a curative focus while empowering the patient and family to define what hope and quality of life means to them.
Of course, some patient/families do not view a palliative-only approach as an appropriate treatment model. Particularly in the case of prolonged, chronic diseases such as congestive heart failure, COPD, and dementia, many patients and families do not grasp that these are ultimately fatal conditions. Dr. Casarett and colleagues (Casarett et al., 2005; Casarett, Van Ness, O’Leary and Fried, 2006; Casarett and Quill, 2007) suggest that an explanation of the progressive and fatal nature of the condition can help patients and families come to more realistic terms with their options. Mentioning to these patient/families that hospice may be a future possibility can plant a seed that can reduce resistance later should they come to accept the terminal nature of the condition.
How the illness affects daily life
Before formally introducing hospice, you may want to ascertain some daily life information, including uncomfortable or bothersome symptoms and emotions:
- Poor sleep
- Lack of appetite
- Difficulty breathing
As well, understanding patient and family needs for support services ahead of time can help in the introduction of hospice as an appropriate plan of care. Services families often are unaware of include:
- Support for emotional issues surrounding the disease, including caregiving issues for family members
- Information about financial and other support services available in the community
- Home visits from a nurse who can serve as your eyes and ears to keep you abreast of changes and relay any new instructions from you concerning alterations in medication, dosage, etc.
- 24 hour telephone access to trained personnel to assist with caregiving concerns
- Visits from a bath aide several times a week to assist with this tiring but necessary activity
- Visits from a trained volunteer to provide respite for family members
- Expert, and free consultation by the Medical Director, a specialist in palliative care
Many people have misconceptions about hospice. They believe that it is for the imminently dying or that a referral to hospice means their physician has “given up on them.” The mere mention of hospice can trigger these associations and any negative experiences or stories they may have heard. To avoid an emotionally reflexive response, it is best to ease into the hospice discussion by linking it into their daily care and service needs.
“From what we’ve discussed, then, it looks like you could use some help with … There is an excellent service that can provide this assistance for free or very low cost. Have you heard of hospice? What is your understanding of their program?”
By emphasizing the program and services that match their needs, you demonstrate your good listening and understanding of their daily life issues. You also keep their attention on the benefits. Certainly, it’s a good idea, at this point, to allow for an emotional reaction and to respond with reassurance about your commitment to the patient/family.
It’s also wise to ask if the patient or any family members present have had past experience with hospice, or had friends who have had experience with it. A question of this nature allows you to identify any myths, including any concerns they might have that you will no longer be their physician. (This is where you can describe hospice as an adjunct service, where you continue as their doctor and will be consulted regularly. Hospice just allows you to have “eyes and ears” coming to their home on a regular basis to answer questions and report back to you concerning any changes that might best be handled with new medications or therapies.) For some patients, it is reassuring to also know that patients do sometimes “graduate” out of hospice because their condition improves.
This is also a good time to point out that hospice services are paid by Medicare, including equipment, medications, and staff time needed to keep the patient comfortable and out of pain. In some situations a small co-pay may be required, but it is usually nominal.
Making the referral
For families that are not yet sure if hospice is a service they wish to pursue, you do have the option of requesting an “information only” visit. A representative from our hospice will come out, and with no strings attached, talk to the patient and family about their care and service needs. The representative will describe the services available, as well as the cost and eligibility requirements. The patient and family can ask questions and will be given brochures about our hospice and the range of services they can receive. You and the patient can then discuss the hospice option and determine if this is an appropriate fit.
If you feel the patient and family are ready for hospice, you can contact us at [Your Phone Number] and request an enrollment visit.
We understand that it is challenging to bring up the hospice option. Hospice may not be appropriate for all your terminally ill patients. But it is certainly a service that is being under-utilized, both in actual numbers of eligible patients as well as people being referred so late in the disease trajectory that they do not have the 30-90 days of service that appear to be optimal for maximum use and satisfaction. If there is anything we can do to help you connect appropriate families with the palliative care and services they require, by all means contact us at [Your Phone Number] and we will be happy to partner with you in this endeavor.
Quick tipsheet for initiating a hospice discussion
(A structured discussion framework inspired by the work of Dr. Casarett)
- Establish the medical facts. To avoid mixed messages from medical professionals, coordinate with other care providers to gain consensus about the hospice choice.
- Set the stage. Choose a comfortable time and setting for an uninterrupted conversation. It is optimal if key decision makers in the family are present.
- Assess understanding of the prognosis. Begin by asking the patient about his/her understanding of the disease, its severity, and what the likely outcome is to be. This is a time to observe any misunderstandings or denial on the part of the patient or family.
- Help patient define his/her goals for the foreseeable future. These goals can be treatment goals and can determine whether the focus is curative or palliative. Beyond treatment goals, however, it is instructive to ask about hopes and fears. Understanding what the patient hopes to achieve in the near future (even nonmedical goals such as attending a family event or seeing a sibling one last time) can provide hope and personal empowerment even in the face of an incurable condition. Similarly, understanding what the patient/family hopes to avoid (e.g., uncontrolled pain, dying in the hospital) can help maximize the patient/family’s unique definition of quality of life.
- Reframe those goals, as needed, to align with the realities of the prognosis. If patient/family goals are unrealistic, a realignment process can be initiated with compassion by using “wish statements” (e.g., “I wish I could say that we will be able to …, but we can’t. What we can do is …”). It may take time for the family to adjust emotionally to this news. Having this conversation sooner rather than later will provide maximum opportunity for the family to regroup and be empowered to come up with their own achievable goals, be they medical, or personal. It is easier to let go of curative care if there are other hopes to focus on. The hospice option is most appropriately brought up once the patient/family treatment goals are consistent with a palliative approach.
- Identify care/service needs, for the patient and family members. Because many people erroneously associate hospice with “giving up” or imminent death, acceptance of the service can be facilitated by first identifying the patient’s symptoms in need of palliation (pain, constipation, fatigue, sadness, anxiety). Next, looking more at the day-to-day realities of living with a serious condition, identify assistance needs such as weekly home visits to address changing symptoms, emotional or spiritual support, a home health aide to bathe and groom the patient, advice concerning financial or other community programs the patient or family may be eligible for, etc.
- Introduce hospice as a service that supports goals and addresses care needs. Once the palliative needs and desired services are identified, hospice can be introduced as a program that is free, or very low cost, and designed specifically to address the patient/family’s care and service needs.
- Respond to emotions and concerns. Acknowledging feelings and addressing concerns is paramount before eventually making the official recommendation of hospice. Asking about any past experience or concerns about hospice offers an opportunity to dispel myths and reassert the physician’s continued participation in care.
- Make a hospice referral. An initial enrollment visit can be scheduled, or an “information only” visit.
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Supporting patients and families
A full 83% of Americans wish to die at home. These were the findings of a 2004 nationwide survey of 400 demographically representative adults that was presented to the National Hospice and Palliative Care Organization (Quality of Life Matters, 2005). Survey respondents identified dying with family members around them, dying with dignity, dying pain free, and dying with the benefit of spiritual counseling as the most important qualities of a “good death.” Although hospice can provide the instrumental, emotional, and spiritual support families need to create a good death, at home or in a facility, surprisingly few people understand this.
A group of Pennsylvania researchers (Casarett, Crowley, & Hirschman, 2004) discovered that bereaved family members valued a number of hospice services they had not expected to receive. On the basis of their findings, they recommend bringing up the following topics during discussions about advance care planning or the hospice option:
- spiritual and emotional support
- 24-hour access to telephone assistance/advice
- regular visits from a nurse
- education about their condition
- free coordination of care and case management
- pain and symptom management
- help for family caregivers
Family caregivers with fewer days of hospice support are four times more likely to develop a major depressive disorder than those who had a longer length of service (Bradley and colleagues, 2004). Moreover, families who are on hospice longer report receiving a greater portion of services and greater benefits (e.g., 80% of expected services for those on hospice for one month as opposed to 95% of services for those who were on for three months or more; Rickerson and colleagues, 2005).
Unfortunately, although hospice use has increased, Medicare data show that 10% of hospice patients are enrolled on their last day of life and 25% of hospice patients are on service for one week or less. The median length of stay is only 20 days. (Medicare Payment Advisory Commission, 2006). Clearly, earlier referrals are needed to provide the care families need and deserve.
Many erroneously believe that hospice is appropriate only for home care. In fact, if prescribed by a physician, hospice services can be delivered in nursing homes. According to a 2006 JAMA article (Hanson & Ersek), facilities with a hospice contract are the preferred option. Studies indicate that residents on hospice care are more likely to have their pain assessed and managed, and are less likely to have physical restraints or receive inappropriate medications (Miller and colleagues, 2002; Miller and colleagues, 2003). Furthermore, in a comparison study, families rated nursing home care with hospice participation higher than nursing home care alone (Baer & Hanson, 2000).
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