5 Things I Learned About Hospice Care When Mom Passed
A month before mom passed, I had the opportunity to attend a health care meeting at a local residential hospice. In my 15 years living in North Carolina, I had never been there and boy was I impressed. So when mom faced the need for hospice care, I immediately knew where we were going to go.
If you could describe death as a beautiful experience, well, hers was and hospice made it so. The dignity, the rituals, the respect made her passing was a spiritual event. I learned that hospice is a conscious choice, one that you have to plan for in your advance directives.
It doesn’t try to postpone death, or to make death happen more quickly. It allows the patient’s terminal disease to progress at a natural rate while preventing or treating uncomfortable symptoms as they arise. Hospice health care controls or eliminates pain, nausea, breathing difficulties, and other symptoms brought about by the patient’s disease or the dying process.
Patients who choose to receive hospice care aren’t giving up. They haven’t lost hope. Rather, the focus of their hope has shifted. While they may still hope for a cure, they’re choosing to spend their energy toward the fulfillment of other hopes.
They may hope to mend a relationship, to resolve an internal conflict, to provide as smooth a transition as possible for a loved one, or to accomplish a specific goal.
Hospice also provides emotional, psychological, and spiritual care for the patient’s loved ones. They did for me and for my wife.
Hospice is a Form of Palliative Care
Palliative care is treatment aimed at relieving the symptoms associated with serious illnesses. Its goal is to improve a patient’s quality of life. It can begin at any time during a serious illness and ideally at the time of diagnosis.
Hospice care is simply one form of palliative care that is appropriate for patients in the final stage of life. This means those with a life expectancy of six months or less. Palliative care can be given regardless of life expectancy.
Cancer patients most often utilize palliative care. But it can be used for heart failure patients, liver failure patients, patients with respiratory disease. Any serious illness that negatively impacts a patient’s quality of life can benefit from palliative care.
Aggressive palliative care can relieve distressing side effects from cancer treatment like nausea and vomiting, fatigue, pain. The goal of palliative care is simply to relieve suffering and improve quality of life. It also addresses emotional suffering and spiritual care needs.
Hospice Care is About Dignity at Death
For me personally, hospice was about rituals during mom’s last two days of life. A priest came in and administered last rites. Mom could not speak so my wife and I spoke for her. A choir came in on her last day. There was support for the family through empathetic staff and volunteers.
Even after she passed there was a ceremony with music, candles, and a procession. This tool place while her body was taken from the room to the funeral director’s hearse.
It was all about dignity at death. My father-in-law received the same care in the hospital with hospice. When my sister passed in 2014, she died alone. Of course at 66, we did not talk about hospice and even though she had Stage 4 lung cancer, we were all in denial about her life expectancy.
There are many reasons people do not utilize hospice more. They may be unaware of it or not knowledgeable enough. That causes misconceptions and fear. But make no mistake, it is still a hard decision to make.
Mom was 94, just had major surgery, and had a heart attack during recovery. She was both unwilling and unable to rehab. She wanted to be with my sister. So we started the conversation and did it with care and did it slowly. First me, then my wife, then the hospitalist, then the hospice care people at the hospital.
Mom had all her cognition. She thought and prayed on it and came to her own conclusion that hospice was probably appropriate. She was only in hospice 55 hours but the positive memory of her end of life experience will live with me forever.
Ask the Right Questions When Choosing Hospice
Mom received care in a residential hospice, a place where you live for a very short period of time. Most people receive this type of care in the home. The National Hospice and Palliative Care Organization has a four-page document that outlines the key questions to ask when choosing hospice.
People Need to Talk About and Plan for Their End of Life Wishes
I think it is essential to have an advanced directive that spells out the kind of care you would like to receive in case you cannot speak for yourself. Equally important is having a health care power of attorney that will follow the wishes you have outlined.
These are documents everyone can complete when they are young and healthy. When death could be a long way off, the conversation is frankly easier to have. When things are done in a crisis, it is never good.
The last memory of a loved one is something that will be with you forever, so just as we plan in life, we also have to plan for death. “Death ends a life, but it does not end a relationship.” – Robert Anderson
What about you? Have you had the discussion with mom or dad about their end of life wishes? Have you thought about your own wishes? You need too. Please join the conversation.