It’s not a conversation any physician looks forward to having. The approaching holidays can make it even more difficult to bring up the fact that a patient’s condition has declined and the time has come to move the focus from curative treatment to palliative care.
There can be an inclination for families to try to just get through December with their loved one having one last holiday at home. Unfortunately, a factor that may not be taken into account is that the acuity of a patient who would otherwise qualify for hospice may require a level of care that can be overwhelming for a family to manage alone.
Craig Greer, Director of Special Programs at Comfort Care Hospice, said “Families try to limp through the holidays, often not knowing how much better their time together could be with hospice resources helping to ease the burden of care.”
Although most people prefer to be at home, and those in hospice often say they wish they had asked for it earlier, all too often this resource is brought in very late in the course of the illness.
More than one-third of American patients live only one week or less after being admitted to hospice, and half will die within three weeks. Why are hospice resources not being offered earlier?
“We live in a culture that denies death. Physicians go into medicine to save lives. Everyone dies at some point, but when you have a patient even the best of today’s medicine can’t save, death can still feel like a failure,” Greer said. “Physicians may know the point has come where there is little hope, but when they see the pain in the eyes of a family asking for another treatment to try, it’s hard not to offer something, even if it is likely to be futile.
Rutland said, “People may think of referring a patient to hospice as giving up. It’s the opposite of that. It’s about taking action rather than passively waiting. It’s about helping patients live the best quality of life possible while they’re alive. Hospice simply shifts the focus from aggressively treating to cure to aggressively treating symptoms.”
Greer agreed. “Some of the delay in referring patients to hospice is because of the misconception that it’s something you do when there is nothing else you can do. Hospice can do a lot for the patient to maximize quality of life while minimizing discomfort. “
Hospices typically offer four levels of care with a multidisciplinary team that provides nursing care, assistance in the routine tasks of daily living, psychosocial support and education. For patients and families who may have been in too much shock from hearing a life-limiting diagnosis to remember much of what their doctor said, education can be particularly helpful in easing the anxiety of the unknown.
“During every nursing visit, the hospice nurse educates the family on what they are observing—here’s where we are, here’s what is happening, and this is what to expect next,” Rutland said. “It takes a lot of fear out of the situation.”
The first level of hospice care offers routine, in-home assistance with the tasks of day-to-day living, and nursing visits to help with medications, medical equipment, treatment and assessment, and education. Respite care is available to give caregivers a break for a few days. If a crisis occurs with pain or symptoms that are out of control, hospice can be upgraded to continuous care with a nurse at the beside until the crisis is resolved. If symptoms can’t be managed in the home during a crisis, in-patient care will be provided in a hospital setting, usually for five days or less, with treatment directed toward getting the patient back home.
The most common admissions to hospice are for cancer, heart and lung disorders, Alzheimer’s disease and dementia, although hospice care is now also available for infants and children with life-limiting disorders.
“Children’s Hospital approached us about offering hospice for pediatric patients,” Greer said. “There is a different dynamic and it requires special training, since medical equipment and how children respond can be different. Since children are usually covered under insurance rather than Medicare, we can sometimes be more aggressive in trying new treatments while we continue hospice support.”
In working with hospice patients, Greer says it’s important to ask them how they are doing, not just how their disease is doing.
“There are social and psychological aspect that are unique to each patient. We need to listen to patients and understand what living well is to them. I had a patient, a Korean War veteran, who refused pain medications, even though he was in terrible pain. When I asked him why, he looked at me with pleading eyes and said, ‘This is the only thing I can control. I choose if and when I take pain meds, and when I don’t want to take them, I can say no.’ We need to listen to their goals.”
Rutland said, “Being in hospice doesn’t mean you can’t do the things that are important to you. One of our patients said she wanted to go to the beach, so we said, let’s go to the beach. We arranged for one of our locations there to care for her while she was enjoying a few days by the Gulf. The psychological aspects of making a patient more comfortable can add so much to their lives. We support them in doing what they want to do—enjoying the music they love, the art they love, surrounded by the people they love.”
As the last days approach, nursing visits may become more frequent and counseling may begin to help families deal with the grief of imminent loss. Some hospices have trained volunteers to sit with patients to give the family a break, or as an on-call vigil team.
Hospice workers can become close to patients and their families, and they, too, feel the loss when a patient dies. Most teams have meetings or a ritual for closure to say goodbye, such as tying a ribbon on a wreath. It takes a special type of person to work in hospice, and through their work, they add quality to their patient’s lives.
In life-limiting illnesses, the likely survival time of patients with the same condition can vary greatly and be difficult to predict. So when should the conversation about hospice begin?
Ideally, the best time to talk about hospice is when the patient isn’t ill. It should be part of long-term planning, just like discussing a living will, a DNR and whether people want to be listed as an organ donor on their driver’s license.
“We spend nine months preparing for the birth of a baby, but we don’t spend a lot of time preparing to leave the world in as much dignity and comfort as possible,” said Rutland. “If we discuss the concept of hospice in advance, people will understand what it is and will be able to make better decisions. We do informational consults and can be a resource for physicians and patients. Even if hospice isn’t something they need now, they’ll know what is available if they need it later.”
Greer said, “People need to be more proactive about their healthcare throughout their lives. Theconversationproject.org is a free online resource. There’s a film we show when we speak to civic groups called ‘The Conversation,’ and there’s also a brochure on ‘How to talk to your doctor.’ The project grew out of a grass-roots effort to encourage people to consider how they want to live their lives while they are well, and gives them the information to help them spend their last days living as they choose.”
