When patients or family hear the word ‘hospice’, it triggers a cascade of defense mechanisms. What they know is that Hospice provides symptom management for the last 6 months of life. What they may not know is that Hospice is a wholistic service with your loved one at the center. As a health care provider, I realize there is a taboo surrounding the word hospice. I want to clarify what hospice is, and why it should be presented to everyone with a terminal diagnosis as an option.
Hospice, by definition according to merriam-webster is “a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care; also : a facility that provides such a program”
Yet, without knowing the definition of Palliative Care, this may be confusing. Palliation is the relief of symptoms. With terminal illnesses, people often have many uncomfortable symptoms. These symptoms are what lead people to seek medical treatment. They can be pain, nausea, vomiting, constipation, or even a lack of appetite. In hospice, the primary goal is to make the person comfortable, always. This is done by alleviating of the symptoms through medicines (even unconventional medicines) and alternate therapies. Hospice also addresses the emotional aspect of it. Whether that be through a chaplain, a counselor or an empathetic nurse. Many times, the hospice provider will follow up with your family for years to come.
What is most important is that the person receiving hospice care is in control of their care. Meaning, if the person wants to eat salty french fries even though they have high blood pressure, that is ok! If they are weak but want to get up, let them! If they want to live on a diet of sweets, even though they have diabetes, that is ok too! Or, if they want to continue living on a diabetic diet, that is fine too. The emphasis is on quality of their days left. Quantity, is something that is never guaranteed. No healthcare provider can predict how many days a person has left. But a person, with the support of a hospice team, can determine the quality of life on a day to day basis.
Hospice is not taboo, it is a gift.
It hurts finding out that you or your loved one have limited time left on this earth. It is a bitter pill to swallow. The next step is to find out how you can maximize the time that is left. Time is unpredictable, but you can make the most of it with Hospice. Hospice is not taboo, it is a gift. Everyone with a terminal illness should consider it as a treatment option. It is not giving up, it is maximizing the time left.
The ‘C’ Word. When you hear it for the first time it kinda feels like a bomb dropping on your heart. It devastates your mind. It renders you speechless. Cancer sucks. With cancer on the rise, caregivers and support teams alike need to be ready to respond. I speak from experience, not just as a nurse, but as a caregiver too. I remember telling my best friend at the age of 15 about my Dad’s cancer diagnosis. It was early in the morning and I met her at our shared locker just like any other school day. As soon as she saw me, it was clear something was wrong. My head down, hair disheveled. It was definitely a sweatpants day. The word ‘cancer’ was barely audible between my sobs. Her response was perfect. She hugged me immediately, and shuffled us to the nearest bathroom for privacy. We had a moment of silence. Finally she said “We are going to get through this – Papa Gleason is going to get through this”. I liked what she said because she said we; meaning I did not have to go through this alone. It was clear that she meant what she said, and looking back years later she stuck to her word.
Whatever you do say, say it from the heart. Say it like you mean it. I remember a teammate had said to me “Oh, okay sorry”. Her delivery sounded like she was minimizing the situation. Sometimes, we just want to be acknowledged for the severity of what it is.
Start with this:
Follow with this:
- “I want you to know I am here for you, now and whenever you need me”
- “How are you doing?” then “How is your family doing?”
- “I do not know what to say, just know that I care [for you or your family]
- “What can I do to make this a little easier on you?”
- “Can I bring you dinner next Wednesday?”
- “How about I let your dog out when you are at treatment”
- “Do you need a ride at all?”
So long as you are genuine and show your support, your cannot go wrong. Unless you say the following:
- “I know how you feel” – it’s likely that you do not.
- “I understand” – you probably don’t
- “That sucks” – cancer does suck, but your friend or family needs support, not additional negativity
What have you said in the past?
Welcome to the coffee break clinic!
Last week, I spent an hour in my patients room, speaking to him and his family about chemotherapy and how it works. To watch the look of fear transform to the look of empowerment was energizing. I too stepped out of that room refreshed. It was a reminder of why I became a nurse in the first place: patient education! I am here to expand my reach, to provide quality information based on the literature in a way that is easy to understand. I am an oncology nurse, and a nurse practitioner in training. I specialize in primary care, adult gerontology, and oncology. I care deeply about people and am here to share my passion through writing.
Here is what you can expect from me:
- posts supported by evidence in the literature
- topics relevant to health, well-being and prevention
- support where ever you are in your health journey
Above all, I am putting myself out there to get to know others in the health and wellness community. Survivors, caregivers, health care providers, or hobbyists – I want to meet you!
Do you have any topics of interest? I have hundreds of ideas but am open to answering questions too!