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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A time to treat and a time to let go
[Reprinted with permission from the New York Times article posted August 19, 2008 by Jane E. Brody]
Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.
Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.
His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.
“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”
He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient… ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”
Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.
But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.
“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”
The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”
With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.
Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.
“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.
The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”
In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.
Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.
And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.
It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.
Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.
He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.
Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”
The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.
Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.
For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”
He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.
When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”
For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.
(Posted by permission.)
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