Alas, these eight aren’t really secrets, but each represents helpful “under the radar” information when considering and/or entering into hospice care.
(This is a lengthy post, so maybe you should scan the numbered “secrets” based on interest. I put ‘em in bold to make that easier.)
So, with my confession out of the way, here goes . . .
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#1 – You can ask hospice for a no-obligation evaluation.
Many enter hospice care because a physician (your “family” doctor or a specialist) made the recommendation. But even without a doctor’s say-so, you can contact a local hospice and ask for an evaluation. Staff from hospice will meet with the potential patient and/or family. She or he will review medical charts and ask questions about the illness. Hospice won’t charge you for this visit.
If a person is “appropriate,” two doctors (your doctor and a hospice doctor) must agree on hospice care, but that can be a next step after your personal research.
Why ask hospice to visit?
- If your doctor seems reluctant to discuss hospice (or is uninformed), you can take the initiative.
- Maybe you just want to “explore” hospice on your own . . . you can take the initiative.
- Perhaps inviting hospice for an early evaluation helps you evaluate them. Would you want that hospice caring for you or your loved one? You can take the initiative.
#2 – You can start and leave and start hospice again (and again).
What if a hospice patient learns about a treatment to help extend or add quality to her/his life? It’s easy (okay, there’s paperwork) to leave hospice and explore the medical options. They won’t be penalized for leaving. And later, regardless of how any treatment or procedure goes, he or she will be welcomed back by hospice when hospice care is again deemed appropriate.
While I could list other examples, what’s most important to stress is that entering hospice doesn’t “lock” you into only that level of care.
#3 – A patient can say “yes” and “no” to the Hospice team.
Anyone entering hospice is given a team of professionals: RNs and LVNs for nursing, Social Workers, Chaplains, Home Health Aids, and Volunteers.
Comfort care from hospice is extensive. Nurses and home health aids respond to your physical needs, from the complexity of the medications to the small pleasure of a bath. Social Workers provide emotional support. If children or teens are in the home, a Social Worker’s input on how to share and what to talk about regarding death can benefit everyone. A Social Worker also helps with forms, like benefits for veterans or family leave documents from work. Chaplains respond to spiritual needs, and are open to supporting all faith traditions. Volunteers add companionship to a patient, or give caregivers a break by sitting with a patient while errands are completed.
All this being said, with the exception of the nurse, you can say “No” to any of the team. If your rabbi regularly visits, there’s no need for a chaplain. If you have a hired caregiver, you may not need the hospice home health aide. Maybe you are just a private person and don’t want these “strangers” in your home. It’s up to you!
But please remember: the entire team can help you and your family. I encourage a “yes” so that you can meet them. And also realize that even if you say “no” to someone (like a chaplain) in the first week of care, saying “yes” two weeks later will be fine. Chaplains won’t be offended that you “ignored” them and will soon visit and provide spiritual care for your needs.
One registered nurse (RN) will be in charge of the patient. You will likely meet her (or him) in the first days of hospice care. But she will not be the only nurse you see. This RN (often called the Case Manager) will oversee your team. However, if you call in the evenings or weekends, you may welcome an “after hours” nurse into your home. Hospice is on call 24/7, and there are different staff, at different hours, who may respond. (And remember, you are not the only patient. Sometimes a nurse is balancing several patients with concerns on the same day.)
Frequently, one of the team members is a licensed vocational nurse (LVN). He (or she) will handle some of the scheduled visits. An LVN’s boss is the Case Manager RN, but can respond to most of the medical tasks (like wound care, refilling medications, helping with pain management).
The various staff will have different personalities. You will connect to some better than others. But all of the nurses strive to be on “the same page” as they care for you.
#5 – A Good Question to Ask: What types of volunteers do you have?
Every hospice has volunteers to provide additional support for families. Talk to your nurse or social worker about requesting a volunteer. But I urge you to also ask about any unique talents in the volunteer “pool.” Would you like a visit from a masseuse? A musician? A hairdresser? A dog-walker? Someone with a background in theology, a military veteran, a rock climber or . . .?
Every hospice will have multiple volunteers with diverse backgrounds. They all want to spend time with hospice patients. My hospice has had a volunteer that cuts hair and another volunteer that plays a portable dulcimer when visiting. How about a trim or a concert?
Maybe no volunteer will match your interests or hobbies, but unless you ask . . .
#6 – Patients die quickly . . . or live longer than expected. Hospice is not a scheduled death.
Six months or less to live is the mantra and mandate related to hospice care. Anyone deemed “hospice appropriate” has an illness that will likely lead to death in about six months. Because this is the set guideline, most doctors and other hospice medical staff will give this as the best answer to the inevitable question: how long do I have to live?
Even when a patient has a devastating cancer, and a thoughtful, candid oncologist informs the family that only days or weeks remain, some live well beyond that “prediction.” The reverse is equally true. All the trusted experts conclude that someone has many months of life and then death comes in a day or two. We often ask, “Why?”—But there is no easy or comforting answer.
Families are stunned by sudden deaths. Exhausted families wonder if a loved one will ever die.
Because there must be guidelines, six months is the message. But all we have is this moment.
#7 – The chaplain will help with a service after the death.
I hope patients (and families) welcome the chaplain into their home soon after starting hospice. Get to know each other! Since I’ve been a chaplain, I think one of the best parts of spending time with the chaplain involve what they don’t do! He or she won’t give you more pills or encourage you to fill out more forms! They will share coffee and a chat. They will listen to your stories or fears. If you want, they will pray with you.
Whenever you meet your assigned chaplain, please know that he or she will gladly assist with a service for your loved one after the death. If you already have a minister, this likely won’t matter. But many aren’t affiliated with a faith community. With others, a long illness may have caused a slow drift from many relationships, including their congregation.
You may ask the chaplain to help because he or she has become “like family” in your time with hospice. You may ask the chaplain you have never met to help because you need “someone.”
For whatever reason, just ask.
#8 – Even after death, hospice supports you.
While each local-to-you hospice has different resources, all hospices must (based on Medicare rules) provide ongoing support to families and friends for a little over a year after the death.
This may include letters, material on websites, phone calls, access to grief counselors, grief support groups, and workshops. Even hospices with limited resources will likely be aware of, and can recommend, support groups and therapists in a person’s area.
After the death of your loved one, a hospice team member will probably tell you that someone from grief support (or bereavement support) will contact you. Some say, “No thanks.” They can work things out on their own. Or they have a rabbi or priest or imam for advice and comfort. I encourage you to say, “Yes, they can contact me.” How you feel now may not be what you feel later. There is often a blur of activity in the weeks following a death, but then the funeral is over, family departs, friends return to their routines, and your home (and life) may feel . . . different.
Access to professional, caring support can help. I often say that grief is tricky . . . and rarely in a good way. The hospice that helped support you during a loved one’s dying can be there for you as you try to continue living with loss.
I only committed myself to 8 Secrets! However, understanding palliative care (such an odd-sounding word) is crucial. It’s an option that can be a literal lifesaver for patients. I’ll share details about #9 in next week’s posting.
I hope learning about at least one of these “secrets” helps hospice help you.
*Supposedly, headlining a numbered (like 3, 8, or 11) list causes more Internet buzz. Go figure! And who doesn’t want to know “secrets?” Like secrets about Hollywood stars or the best secret hiking trails according to park rangers? Well, I tried with hospice . . .
(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