Our goal at Trellis Supportive Care is to make it easier for you to care for your patients. You remain the physician in charge. We simply support you with an interdisciplinary team of medical, spiritual, and social work professionals. And volunteers!
Resources to help you help families Part of our unique commitment to you includes educational articles for families, available 24/7. We invite you to use and print out any article you like regarding these common, day-to-day issues of caregiving and serious illness:
Difficult Symptoms Support for common problems with serious illness, from managing pain and dyspnea to easing fatigue, nausea, depression, and anxiety.
Emotional-Spiritual Issues Reframing hope in the context of serious illness. Learning to balance joy and grief, resolve family conflict, and explore some of the spiritual questions that arise in challenging times.
Living with Illness Tips for families as they navigate the daily realities of cancer, CHF, COPD, and dementia.
Important Decisions Questions and reflections to help define goals of care. What comprises quality of life for the patient? Straight talk about life support measures and likely outcomes. Explanation of the advance directive.
Once they experience hospice, most patients and families ask, “Why didn’t we hear about this before?”
Plus research indicates that hospice patients not only experience a better quality of life, but also increased quantity. They tend to live longer.
If your patients are experiencing any of the following, it is likely time to consider a hospice discussion. Give us a call at 336-768-3972, or toll-free at 1-888-876-3663 and we’ll gladly do an informational visit to help your patient decide if hospice and palliative care is right for them.
Sudden weight loss
Increased fatigue and weakness
Multiple hospitalizations/ER visits in recent months
Although the Medicare benefit for hospice is for patients expected to live 6 months or less, CMS knows that no one has a crystal ball. Cancer has a fairly predictable trajectory. But many noncancer conditions (e.g., CHF, COPD, advanced Alzheimer’s) defy prognostication. This is where your insight as a clinician comes to the fore.
“Would you be surprised if this patient were to die in the next 6-12 months?”
The “surprised” question is often the best indicator that a hospice discussion could be in order.
If a patient lives longer
Medicare grants patients an initial 90-day period of coverage, with one renewal. If a patient lives longer than 6 months, there is no penalty. As long as the patient is continuing to decline, he or she can have hospice support renewed every 60 days.
With expert symptom management and the support of the interdisciplinary team, hospice patients will often live longer, and with a better quality of life, than those who do not receive hospice. This is great news! There is no doubt that attention to the body, mind, heart, and spirit makes a patient’s day-to-day life better.
If a patient improves
Should a patient’s health improve to the point that he or she is not declining, the patient can “graduate” from hospice. There are no penalties from Medicare. CMS understands that improvement is sometimes part of the process. And if things change and the patient’s health begins to decline again, he or she can go back on hospice with no recrimination.
The “H” word is not one that patients want to hear. And not a favorite discussion for most doctors. That said, there is no doubt that patients and surviving family members do better with the support of hospice.
Sooner rather than later Many guidelines suggest that doctors first introduce hospice if they anticipate a patient is likely to die within a year. Sadly, those conversations are usually postponed until a crisis, resulting in late referrals and far less benefit for both the patient and family.
“Hospice specializes in helping you manage [patient’s challenges] so you can spend the time and energy you have focusing on [patient’s goal].”
The issue of hope Some doctors say they don’t want to bring up hospice because they don’t want their patients to lose hope. We heartily recommend you read our article, Hope and Serious Illness.
It will give you a new perspective on reframing hope to focus on achievable goals (while there is still capacity) and finding moments of joy and anticipation every day. In the last analysis, hospice is about hope, adding life to your patient’s days, and facilitating those activities and events that give life meaning.
Here are steps outlined by Drs. Quill and Casarett for introducing hospice in a positive and effective manner:
“What is your understanding of your condition?”
Find out what the patient thinks about the severity of his or her condition and the likely outcome.
“Tell me a bit about your goals. What’s important to you to do?”
These can be treatment goals, but assessing life goals (to complete a project, go to a family event, spend more time in the garden…) will give you a strong reference point in this shared decision-making discussion. If the goals are unrealistic, this might be a time to reframe expectations: “I wish I could say *** is likely, but I’m not sure that’s realistic. What you might consider is ***.”
“Tell me about your days at home. What are the challenges?”
For instance, are they having trouble with ADLs, such as getting dressed or bathing? Which symptoms are especially bothersome? How are things emotionally? Socially, in the family?
“What if you could have help with these things?”
Hospice can provide a home health aide to give baths. A social worker to talk to about feelings or support programs. A volunteer to give periodic respite to a family caregiver. There is also telephone support 24/7, home visits by a nurse to monitor and manage symptoms, and access to a nondenominational chaplain to discuss spiritual concerns or distress.
“What have you heard about hospice?”
At this point, the patient or family member may glaze over, as they often do once they hear the word “hospice.” But at least they have heard the benefits first. Respond to their emotions and address any misconceptions they may have. After this, you can make the referral whenever they are ready.
When hospice is introduced in this way, patients hear the benefits and you are able to draw a connection between what they want (personal life goals) and hospice’s ability to help.