Studies have clearly shown that the earlier a nursing home patient is referred to hospice, the greater the benefit to the patient, the family, the caregivers, and the nursing home. Sadly, many nursing home patients end up being admitted to hospice late – often during the final hours and days of the patient’s life. One cause of these late referrals is the reluctance of nursing home physicians, nurses, social workers, and others to talk with their nursing home residents about hospice. This systematic and organized approach will help us talk to our nursing home patients (and their families) about hospice.
The first advice I would give to anyone planning to discuss hospice with their nursing home patient (and/or their family) is to introduce hospice as a part of what all good nursing homes naturally do when “the time comes.” It should not be a “big deal” or an anxiety-provoking time for staff or patients. People should hear the following message, “Our nursing home always provides the best care to our patients and when certain needs arise, we naturally call in experts. If you needed a specialty physician, say, a cardiologist, we would naturally ask him or her to see you. So, it is a part of our routine procedure to call hospice in when our patients reach that time in their illness. The expertise and help that hospice brings will benefit you and your family. We always strive to treat our patients as we would want to be treated.”
S – Setting: Establish the setting
Create a comfortable private place. Turn off cell phones and pagers and allow adequate time. Make sure you have tissues available. Ask the patient if there is anyone they would like to have attend the discussion. Invite everyone (family and/or friends) the patient mentions — I have found that the more people present at the meeting, the better.
E – Expectations: Uncover the patient’s (and family’s) expectations
Make sure you uncover the patient’s expectations of their future. That is, their expectations (based on their understanding of their prognosis) from their physicians, their family, and the nursing home. This uncovering process will include asking about prognosis, living wills, health care proxies, and, perhaps, the desire to be re-hospitalized or put on antibiotics again. Patients are sometimes reluctant to hear about hospice because of personal misunderstandings about their disease, the treatment options, or the likely course of the disease. They may think that aggressive medical care can still cure them or they may be unable to face death because they fear it will be painful and agonizing. (Nothing is more frightening – and more unnecessary – than a fear of uncontrolled pain.) Regardless, it is important to explore the patient’s honest expectations of their future.
P – Patient: Find out what the patient (and family) understands
Use open-ended questions to encourage the patient to discuss their current medical situation. A key point in starting a discussion about hospice is to fully grasp the patient’s understanding of their disease and their treatment options. Questions like, “How do you understand what the doctors have said about your illness?” can be a good starting point. Never assume the patient knows more than they are saying. The next step is to explore the goals of the patient and the family and their understanding of treatment options. “What has your physician told you to expect in the next few months as far as treatment?”
E – Emotions: Respond to emotions
An emotional response from the patient is common at this point in the discussion. A sympathetic silence, a comforting hand, and an offer of facial tissues can help tremendously. It is helpful to acknowledge the sadness, anger, or frustration that you feel the patient or family is expressing. This is a difficult time. Patients and families are often grateful for signs that you care and that you are not just “doing your job.”
D – Direct: Discuss hospice care in a direct way
Use your insights into the patient’s (and family’s) goals and fears to give information. Listen for reactions and clarify misunderstandings. When you explain hospice in the context of a patient’s goals, this puts hospice solidly in the spectrum of other medical therapies. Having goals is a way to express hope. In other words, given who the patient is and with the disease they have, what are their goals and hopes for their remaining days, weeks, or months?
Listen carefully to the responses of both the patient and their family. If there is confusion about hospice being a decision to die, or stop fighting, help reassure them that this is a wrong misconception. A hospice recommendation is about how to most effectively continue care for the patient and make every remaining day as productive and fulfilling as possible. AseraCare Hospice will bring an increase in available resources and more intense efforts to help the patient live as well as possible for as long as possible. For example, chaplains, social workers, nurses, volunteers, and physicians may come to their nursing home if needed. Reassure the patient that the Medicare Hospice Benefit covers medications, supplies, and caregiver services. And a referral to hospice means that their own physician can continue to care for them. It may be reassuring to mention that if a new treatment that hospice cannot provide becomes available, the patient may discontinue hospice care at any time.
N – Normalize: Normalize and respond to questions and emotions
It is important to watch the facial response of patients and families. Normalizing their questions with responses like “Many patients feel that way,” “That’s a question that many people wonder about,” “I can easily see how you might feel that way,” helps patients and families to be completely open and comfortable with you.
O – Orchestrate: Orchestrate a specific plan
A well-described and understood plan is often a reassuring conclusion. “I will call AseraCare Hospice this afternoon and a hospice nurse will come out tomorrow to provide more information. I will be around tomorrow also, to answer any other questions you may have.”
T – Tend: Tend to immediate needs
Many patients come to hospice in the midst of very real and immediate needs such as pain or other symptoms, spiritual angst, emotional distress, insomnia – it is important to let AseraCare Hospice know about these because this will enable us to attend to those needs as soon as possible.
When hospice is explained to patients and families in a personal, kind way by a trusted professional, it is likely to be well received. It is interesting that many patients and families often tell us, “I wish I had been admitted to hospice earlier – I don’t know why I was so reluctant.”