Hospice care, and why I advocate strongly for it
Many people think hospice care is the time at the very end of someone’s life, maybe the last few days when the treatment is just comfort measures, the family is gathered around the dying person’s bed crying with Ave Maria playing, and everyone is just waiting for their person to die.
This could not be further from the case. Entry into hospice care has two requirements: that the person with the terminal diagnosis is deemed to be in their last six months of life by a doctor, and that they cease all curative measures. For the patient, this can be a huge relief because it means the end of chemotherapy, radiation, scans, infusions, clinical trials, hospital stays-- everything but comfort measures and palliative care. Often it’s a time of some recovery and increased quality of life as the side effects from other treatments subside and the running around of deep medical times slides into the rearview. Sometimes a patient can be well enough to travel to see friends or family, or even take those dream vacations in these last months.
Getting a doctor to commit to a timeline like this can be sticky, and many doctors are afraid to scare patients by talking about their prognosis-I am here to advocate strongly for you to ask your doctor regularly what your prognosis is. It may come as a surprise to you that very few doctors are comfortable talking about death. They’ve been trained to keep bodies alive at almost any cost through their entire career, and often feel like failures themselves when a person is facing the end of their life. I know, I know. But doctors are just people and are filled with the same range of human emotions as the rest of us. They are not fortune tellers and are often wrong in either direction with the prognosticating; It’s worth it to keep asking for it. I heartily believe it will help you with your quality of life if you are able to push for numbers and therefore be better prepared to manage the time you do have left. A death doula can help patients organize themselves to ask for hospice care and advocate for the prognosis in support of the patient’s quality of life.
There are options for where a person would like to have hospice care. Many people (most?) would prefer to be at home, the home they’ve known for some time, surrounded by their own belongings, pets, family or housemates, free to live their life. There are hospice facilities, and sometimes there’s a hospice wing of a hospital. Of course, cost is a factor, and insurance may not cover in-patient hospice care. Most health insurance plans cover hospice care at home, whether it’s a private pay plan or a government health plan.
When a patient enters into hospice care, they and their caregivers are assigned a team of people. There’s a doctor who leads the team, a nurse, a social worker, a chaplain or spiritual care person, and sometimes a case manager or administrator. This whole team is available to help plan their care, in support of what they want the rest of their life to look like. As a patient progresses in their illness, the team will adjust treatment accordingly. Comfort and quality of life are the top priorities. What a lovely thing! For the rest of this article, I will be discussing hospice care at home.
What do those comfort measures look like? Medical equipment, medicine, and emotional support. Some of the common medical equipment that will be sent are a hospital bed, bedside commode, walker, chucks (like puppy pads for people in bed), there’s a LOT of options that can improve quality of life at home. Medicine means pain relief, nausea control, agitation control, and other symptom management. The hospice team will check in with the patient regularly, and patients and caregivers are always free to contact them at the 24-hour hotline to ask questions or to address changing symptoms/conditions. There will be a comfort kit provided, and instructions for how to use it when things get intense or pain levels increase sharply. The emotional support piece is for the entire care pod, not just the patient. Often there will be a bereavement counselor who will reach out to the family and caregivers to see how they’re holding up, make sure they are caring for themselves and getting breaks in. Caring for someone in a terminal condition is hard work, and takes a toll on the caregivers, no matter how many there are. Another form of support is respite care, when a nurse or aide can be dispatched to the home to give the caregivers a break. The respite can be up to 24 hours long. This is a wonderful and under-utilized feature of hospice care.
The hospice team is also on hand to educate the caregivers and normalize what is happening with the patient, as the illness progresses. Some of the symptoms of a terminally ill person can be confusing or even scary. In this culture we are quite sheltered from the death and dying people and processes, and this time of caregiving can be the first time we’ve encountered these things. It is wonderful to have the nurses and other care providers to help us through these times.
Of course, hospice care does also mean support for a person and their care team as the patient is actively dying. This is a phase that can take from a few hours to a few days and is worth its own whole post or series of articles. In a nutshell it is the time when the body’s systems are actively shutting down. The patient will have stopped taking food or water (this is a GOOD THING! A dehydrated person will not suffer urinary retention, a person with no food in their stomach is less likely to suffer nausea.), may be unconscious most or all of the time. This time can be particularly upsetting to loved ones and the hospice team is there to normalize the processes and support the caregivers as the patient transitions and their body dies.
A death doula can step in to support the ill person and their caregivers and has only their interests in mind. We help to remember the concerns of the patient and represent them to hospice, following up and filling in the gap where there may be a lag. We can help loved ones prepare for their family member’s impending death, including after death care and rituals for loving release of the body. There is so much to learn and manage in this one-time event in each person’s life. This is why we doulas exist, to help understanding and managing these transitions.
I am a strong advocate for hospice care as a radical care structure. It’s comfort-focused and allows the patient to drive the course of treatment based on their desires for how they want to live the rest of their days. It’s an honor to sit next to someone and assist them in this process. Feel free to contact me for more information. Be well.