Even KISS fails.
If the acronym Keep It Simple, Stupid always worked, the staff assigned to introduce potential patients to hospice could successfully use bullet points to convey the basics. Like these three:
- The hospice team will not care for the patient all day and every day.
- Finding the right balance of helpful medications can take time.
- A chaplain is the second-most important member of the team.
Why these “headlines?” During a recent patient care meeting, all were referenced—within moments of each other—when discussing new admissions. Every hospice admit nurse will mention a version of those three (and much more) when introducing hospice care to patients and families. Written material, and links to online resources, will also be provided.
Providing information is easy.
During hospice care, understanding that information is rarely easy.
Let me “drill down” into these three . . .
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The hospice team will not care for the patient all day and every day.
A month will not go by without one or more of our newly admitted patients/caregivers expressing dismay over hospice’s “absence.” Family members thought the team, especially the nurses and home health aides, would be serving their needs around-the-clock. They assumed the nurse would handle all of the doses, rather than training a family caregiver on how and when to give the medication. And wouldn’t the home health aide change the adult diapers or sponge bathe the patient on a daily (or more) basis? Isn’t the hospice staff supposed to do . . . everything?
Except under unusual circumstances, nothing resembling this happens.
The hospice team will support a patient and family. Nurses may visit several times a week. A social worker, able to provide emotional support and with a knowledge about resources (benefits for Veterans, info about local funeral homes, etc.) may visit several times a month. They come to your home to support the patient and family, not move in or take over. They come to help caregivers—whether members of the family or professional caregivers hired by the family—understand how to better support a dying loved one.
Caring for a dying loved one is grueling work. Even on the “best” days, there will be exhaustion, self-doubt, and sleepless nights. There will be tension in the family and tension in your muscles; your back will ache and your heart will break. Moments of beauty will clash with hours of frustration. In all of this, a hospice team will support you. Being able to call them 24/7 for input can be a literal life-saver. Their occasional visits—whether a volunteer sitting with the patient while you shop or the nurse giving instructions for new medications—help you better help your loved one.
Finding the right balance of helpful medications can take time.
We don’t want to be in pain.
We want to be able to handle the pain and still be alert enough for conversations.
We want to have the pain diminished so that we can do things like go to the bathroom. Like dress ourselves. Like be outdoors in the warmth of the sun for a few minutes.
We don’t want to see our loved one agitated or unsettled.
We want everyone to have a peaceful death.
And when hospice comes in with those potent medications—morphine, methadone, benzodiazepines (like Ativan)—we want them to work. Right now!
Everybody is different. Every body is different. It will take time for the drugs to work. Sometimes, in the dying process, the doses are frequently adjusted as the pain evolves. If the patient is in the care of a hospice for less than a week (nationally, about 30% of all patients), the troubling concerns—pain, agitation, surgical wounds—are difficult to manage.
Because of television ads or online “facts,” it’s tempting to think there is always a best medication and correct dosage that can be given at the perfect moment to make the pain go away. But even with skilled and compassionate hospice nurses, there are no guarantees. Often the hope of finding the best medication (and dosage) is complicated by:
- Patients who resist all medications. (We humans can be stubborn until the clichéd cows come home. Or even after they are home.)
- One or more family members that question, argue about, or resist any “new” medication.
- Not following the schedule of dosages.
- Magically thinking the pain will go away on its own.
- Fear of overdosing.
- Dread of addiction.
Your loved one has a fierce, life-limiting disease. No one in hospice has a magic wand.
A chaplain is the second-most important member of the team.
At the meeting I referenced at the beginning, the chaplain said, when asked about a new admission, “This patient declines the chaplain.” He didn’t say it once. As we discussed ten or so individuals entering into hospice care, five refused a chaplain’s visit.
Which is a patient’s right. Other than a nurse, patients can say “No!” to others on the hospice team. With a chaplain, I’ve heard many reasons for a refusal:
- A family has their own pastor, rabbi, imam, etc.
- The patient is not religious.
- A chaplain is only needed for a prayer in the moment before death.
Accuse me of bias, but I think every hospice patient should say “Yes!” to a chaplain. While I could list 50 reasons, I’ll keep it simple and suggest two:
When I was a chaplain, some key visits weren’t with the patient. The spouse who was caregiver, or the adult child who had just flown across the country, needed to “vent.” They needed another to hear their fears or hopes. Chaplains are excellent listeners. They don’t promote “religion,” but instead relationships. They are there to support a patient and family during one of the most difficult emotional (and yes, spiritual) events of their lives.
I consider a chaplain the second-most important member of the hospice team. All patients are different. Some prioritize a home health aide to assist with daily activities. Some need a social worker so that Veteran’s benefits are understood and the patient/family is connected to financial resources. Some (many!) patients require a nurse for pain management. A chaplain easily plays the role of understanding the unique needs of each patient. S/he can quickly convey a patient’s/caregiver’s changes, requests, and questions to the rest of the team.
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Regardless of how simple the communication is with the patients/caregivers entering hospice care, misunderstandings will occur. In spite of how well written and easily accessible anything is, confusion will continue. Supporting a dying loved one can stagger the strongest and smartest of us.
The best hospices know it’s difficult to comprehend information when facing death. With clarity and without judgment, they will explain the hospice benefits. And then explain them again.
And then again . . .
(By the way, no one, and no question, is stupid. Let’s just stick with the first three letters of the acronym: Keep It Simple.)
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by