Someone has used the “H” word. It could have been the doctor, a nurse from Home Health, or maybe just a well-meaning family member, but it has you a little scared and wondering if now is the right time. Hospice; It could seem like giving up, like abandoning all the hard work that has gone into “getting better”, like telling the doctors you don’t think they are doing a good enough job. You don’t want to disappoint anyone, scare the entire family, or cause even more drama, but maybe the idea of “comfort care” sounds like a breath of fresh air. It could mean not having to take any more trips to the Emergency Room at 2:00 in the morning or no more chemo, dialysis, MRI scans, specialists, physical therapy, you fill in the blank. Maybe you can finally say “enough is enough” and open a new chapter in your life. Will one more round of chemo cure the cancer? Would knowing the results of that MRI change what you would do? Would seeing that one last specialist reverse the disease process? Is this quality of life? If the answer is “no” than it might be time consider hospice.
Whether you are considering hospice for yourself, or caring for someone that is, it’s important to understand what exactly hospice is and how it will impact you. Hospice is not a place. It is a concept of care that focuses on the patient, their family, and all those caring for them. It is a team of health care professionals trained in working with patients facing the end of their lives. People who are dedicated to partnering with their patients, hearing their story, and to guiding them through their end of life journey. Teaching them that the destination is already determined but they can give direction to the path. It is care that is considered “palliative”, which means comfort care. It’s closing the chapter on aggressive treatment but not forgoing all medical interventions.
Your hospice team will include a Medical Director, Registered Nurse, Certified Nursing Assistant, Social Worker, and Spiritual Care Coordinator. There will also be volunteer and bereavement services available. And yes, most of these people will probably want to see you in the first few days of starting services. No, it won’t always be so overwhelming. They will get into a routine and you will see your nurse and aide a few times per week, the social worker and spiritual care coordinator a few times a month, and the volunteer as you set it up. You will get to know your team, and they will get to know you. You will probably look forward to their visits because their goal is to make you feel better not just physically, but emotionally and spiritually. You may get tired of people asking you how you are doing, but you will always know that they genuinely want to know the answer. They won’t look like the angels of death, but they may tell a few good jokes about it. They will give you a safe place to talk about the good, the bad, and the ugly in whatever capacity you want. You are not going to scare them away or shock them if you say that you are ready for death.
There are four levels of hospice care; Routine Home Care, In-patient, Respite, and Continuous Care. Routine Home Care is where most patients are admitted to, and remain during most of their time on hospice. On Routine Home Care symptoms are managed, placement is stable, and things are going as smoothly as can be expected. The hospice team is bringing services to the patient in their “home” setting that could be a private home, adult group home, assisted living, or skilled nursing facility. In-patient is available when symptoms are not able to be managed in the home setting. This can be done in an in-patient unit or in a skilled nursing facility the hospice is contracted with and typically lasts only a few days. It’s very similar to being admitted into the hospital, except your team that is familiar with you will continue to stay involved. Once your symptoms are managed again, you will discharge back to routine home care. Respite is a benefit that provides 5 days in a contracted facility that allows for a break for the caregiver. This is usually a scheduled time, but can be used in an emergency situation such as a sick caregiver. Continuous Care is used very rarely and brings the in-patient level of care to the patient in their home environment if they are not stable enough to be transported. This is always very short term and provided in emergency situations only.
Remember that the timing for hospice has to be right. It will be asked of you to stop going to see most of your doctors, to stop any type of aggressive treatment, and use inpatient status instead of the hospital. But if the time is right, there is much to be gained by bringing hospice in. You will be partnering with a team of highly specialized professionals with incredibly big hearts that have a single vison of helping you write a beautiful last chapter in your story.
For more information on hospice please click here.