5 Things to Know Before Beginning Hospice Care
1. Schedule a Hospice Informational Visit.
If the doctor recommended hospice, that means your health has declined significantly. Medicare has strict criteria for hospice and the H WORD is not thrown around lightly. Schedule a hospice informational visit with the hospice team the physician recommended or any hospice that has a good reputation in the area. You are just gathering information—you are not committing to anything. A hospice nurse will come to visit you where you live and tell you about the program and what they offer. Most hospices offer the same services, but ask around because hospices can vary significantly if they are having a staffing shortage or are in the middle of a strike. This blogpost helps to explain the hospice team.
2. You Are Allowed to Refuse Hospice Support.
Many patients sign up for hospice and are relieved to have compassionate medical support; however, many patients refuse hospice support even though it could be beneficial. There are many reasons you may not be ready for hospice.
In my experience, some patients simply are not ready to stop the fight or throw in the towel. I have seen many of these patients prove their medical team wrong and live years after being given a six month prognosis. Many patients graduate from hospice. Alive. And well.
Some patients are in denial about their health. Melody Beattie in Codependent No More beautifully describes denial as “a shock absorber for the soul.” Denial gives us the time necessary to allow our brains to catch up to the reality of our bodies.
Some patients do not want to experience a new medical team. You are giving up your familiar medical routines, treatments, doctors, and care centers, and your time with the nice oncology nurses—it is a lot to give up.
Your family wants to get more involved in your medical care, and that scares the heck out of many patients.
Patient autonomy is the right to self-determination, the right to make decisions about your health, your life, and your death. I am a fan of patient autonomy even when it gets messy. And it may get messy. Patients who want independence even though their health is failing may have a fall or an incident and wind up in the ER. (Note: It is easy to get on the toilet independently but much more difficult to get off the toilet. It is also easier to go up the stairs independently than down.)
If you are the potential hospice patient, you still have the right to advocate for whatever you want and refuse hospice support. Not making a choice is making a choice.
If you are a family member, take a breath and read this blog post What to Do When Your Loved One Refuses Hospice Support. Sometimes independence trumps what you may think is practical.
Family and friends will be the primary caregivers when a patient has hospice care in their home.
3. Family and Friends Are the Primary Caregivers.
When my mom was sick with cancer, the admitting hospice nurse came to the home. I looked her up and down and said, “I think you can fit on the living room couch; are you okay with sleeping there?” She nervously laughed and said, “Oh, I am not staying here. You will have a different nurse pop in two to three times a week.” And the realization slowly settled in that I would be the one to take my mom to the bathroom, wash her hair, feed her, and give her medications and suppositories if needed.
Like I did, many people have this idea that hospice is 24/7 care, but that is not how it is structured. Hospice is sophisticated medical care offered in short visits throughout the week in your home. So whether the patient lives in a facility, at home, or in an RV, the hospice team members will come to you for brief visits. A hospice nurse is available 24/7 by phone, and a nurse can come visit if urgently needed.
A typical week with your hospice team will include one to three visits from a hospice nurse and two weekly visits with a CNA (certified nurse assistant) to assist with your bedbath, or shower. If you want, a chaplain or social worker may also come out weekly. At most, hospice professionals will be in your home a total of eight hours a week. That leaves 160 hours a week that you will need some tending. Unless you live in a nursing home with 24-hour care, your family and friends are expected to provide the care as you decline.
Most families are surprised by this information and have to quickly mobilize care.
Some hospice facilities do exist, but they all have different requirements for entry. You may need to pay out of pocket for these. Rarely will a hospice insurance benefit pay for hospice and a place to live, nor will it pay for caregivers to come to the home.
Granted, not every hospice patient will need 24-hour care right away, but as you decline, you will need more help. You will definitely need 24-hour care as you get closer to dying.
If you feel your care cannot be managed at home, call the hospice team for help. Usually, the blessed social worker can offer resources to find financially and medically realistic options for care, although it will still likely be an out-of-pocket expense.
4. It Is Helpful to Know What to Expect When Someone Dies.
When my mom was dying from lung cancer, we were both surprised at every turn. My questions were endless. Why is she not eating? Why can’t she get out of bed today? How can I keep her more comfortable? When you know what to expect with death, you can be better prepared and respond rather than react. (Ideally.)
Caveat: Death is a divine life event that occurs in its own time. Although I have neatly laid out below what it will look like when someone declines, all patients have their own story, their own decline, and their own unique way of exiting this earth. Some patients decline rapidly, some slowly, some have sudden terminal events, some end up in the hospital, and some get better, graduate from hospice, and live much longer than anyone could have believed possible.
Hospice patients will eventually physically decline. Weakness and fatigue can settle in slowly or quickly. Early on, you will no longer be able to drive. Walking will eventually become difficult due to weakness and fatigue, you will need more support at this time. As you get weaker and more fatigued, the caregiver will need to assist with food preparation, medication administration, walking, wheel-chairing, dressing, and laundry.
Over time, you will need more help with going to the bathroom. You may need someone to help you on and off the toilet. You may also need to get a commode—a convenient movable toilet that can be placed close to the bed. This is helpful when patients have urinary urgency or the walk to the bathroom has become burdensome.
You may need help with showering, either through standby-assist or a shower chair, due to fatigue. You may need help dressing after the shower and help with overall hygiene, such as teeth-cleaning or washing your face and hands.
As you continue to decline, your eating needs will also change. You may need someone to prepare and serve your food. You will gradually eat smaller but more frequent meals. At some point, it will be difficult to swallow and you will need easy-to-eat foods like ice cream and yogurt.
Over the course of weeks or months, you will need help with managing your medications and symptoms, such as pain, anxiety, or constipation.
There will come a day when you will be unable to get out of bed anymore and you will definitely need 24-hour care. At this stage, your briefs will need to be changed when you have a bowel movement or urinate or you may need a catheter. You will need to be repositioned in bed often, and your family or friend or caregiver will need to get you all of the important things to make your life as wonderful and big as it can be—food, drinks, snacks, scotch, chocolate, and the remote control.
You will ideally sleep more and more every day and then slip into an unresponsive state, and when your body, heart, and mind are ready (or not), you will breathe your last breath.
Many of my hospice patients value their independence and do not want to ask for help. But as you can see, you will need some help during this process. It is a gift to care for someone as they die, the last one you will give.
5. Get Some Emotional Support.
Hospice was created to support the patient emotionally, spiritually, and physically. I have taken care of thousands of hospice patients over eighteen years, and I know that dying can feel lonely and acceptance takes time. Easier deaths usually have some semblance of internal peace in the patient, which generally requires some mental and emotional work for the patient as well as support from family or friends or communities.
Your hospice team will have a chaplain and social worker available to process the murky questions at the end of life. Why me? Why now? How do I get comfortable with the notion of my death? The CNAs and nurses are also available to sit with you as you grapple with the greatest mystery of our life.
Encourage your children, partners, and friends to read this post so they have some idea of dying may look like. Most families have no clue, and patients feel bad about asking their kids for help because they do not want to impose on their kids’ busy lives. Make a list of the people you can call on, including faith communities. The hospice social worker may also be able to connect you with financially and medically realistic options for help.
Being confronted with your mortality is heavy. You are probably not ready to die. Very few people are. Our death is one of the most sacred and holy events in our lifetime that we rarely pay attention to, acknowledge, or prepare for. It's okay, you are not alone. If your health is declining and your doctor feels you could benefit from hospice support, consider gathering more information about hospice. Or you can just keep on living your beautiful life as you wish with or without support. This is your life and, at some point, your death. You are the one who gets to write your own final chapter.
Blessings.