Over the years, I have given inservice trainings on a variety of hospice-related topics to various hospitals, Grand Rounds, or monthly physician’s meetings.
I talked about end of life care and the ways hospice does and does not fit into the medical model. It was always a hard sell. It seemed at every meeting a physician would state that the medical model is “never stop trying.” By never admitting defeat we learn to help others, to cure disease. The medical model of always treating is how disease is conquered.”
I agree with that philosophy. We learn from each situation. We learn what to do and what not to do. What works, helps, and what doesn’t. What I don’t agree with is making it an across the board, “we never stop trying” policy.
Everyone dies. Death will not be conquered. It can be forestalled and that is where the medical model comes in. We learn through trying. The medical rounds physician is correct — BUT (I knew you were waiting for the BUT) I think the patient has the right to make that decision, not the physician.
If you or a loved one are living with a serious illness, you may be looking for care that can help relieve symptoms, improve quality of life, and support you and your family. Palliative care does that and more.
Palliative care is specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness—no matter the diagnosis or stage of illness. The goal is to improve quality of life for both the patient and the family.
But how do you know if palliative care is right for you? And how do you find a provider near you? Here’s are a few tips to get you started.
1. Talk to Your Doctor and Ask for a Referral
Start by speaking with your doctor, as they’ll be the one to refer you to palliative care. This would be the doctor, such as an oncologist, cardiologist, or neurologist, who diagnosed your serious illness. If they haven’t mentioned palliative care on their own, it’s okay to bring it up and ask if palliative care can help you manage symptoms or improve your quality of life—and ask for a referral.
Tip: If you’re unsure if palliative care is right for you, you can take a quick 5-question quiz about your symptoms, diagnosis, and support needs. Based on your answers, the quiz will determine whether palliative care can help. Remember, you can receive palliative care at any point of your illness.
2. Find a Palliative Care Provider
Once you and your doctor determine if palliative care is right for you, it’s time to find a palliative care provider in your area. If you’re admitted to the hospital, your doctor will ask the hospital’s palliative care team to visit you. If you’re living at home or another place within the community, your doctor will refer you to a palliative care doctor they trust.
If your doctor doesn’t have someone in mind, they can check out the Palliative Care Provider Directory on GetPalliativeCare.org. This directory is searchable by ZIP code and care setting (whether it’s a hospital, office/clinic, home, or nursing home), and includes palliative care programs that have listed themselves.
An internet search defines a miracle as: “a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.” I, Barbara, define “a miracle” as “an event attributed to a supernatural being (God or gods), a miracle worker, a saint, or a religious leader.” It is an event that seems to defy all logic.
With that definition, you have to be a pretty high stakes gambler to bet your life (literally) on the idea that a miracle is going to cure your life threatening illness.
People tend to miss what is in front of them, which is the present moment. How many of us live in past memories or future ideals? Most of us don’t live in the immediate moment — and it is that moment that sets the stage for what follows — for the future.
Grief is a lot about the empty space they left behind. It is learning how to fill the space we had when we were a “we” that has become a space of emptiness now that we are an “I.”
I think the major revelation you all gave me with your suggestions is there are many kinds of “we,” not just a partner “we.” Baxter cat and I are a “we.” Actually so are the birds, squirrels and fish that I am responsible for. Family makes me a “we.” My friends make me a “we.” You see what I am saying. I am not as alone as I thought.
We are born, we experience, and then we die. That is how the “game” of life works. If it is a guarantee of life that living will at some point end, why do we have such a challenge coming to terms with a terminal diagnosis?
Yes, medical advances have been amazing in curing and healing, BUT death will still come at some point.
There are two ways to die. Fast is one way, where you have a heart attack or a stroke or you’re hit by a truck. The body is alive one minute and dead the next. There is no process here. It is immediate. There are no signs, no warnings. A person is literally alive one minute and dead (for whatever reason) the next.
In these difficult economic times, families caring for a loved one with a life-limiting illness often face heartbreaking choices. When the primary wage earner becomes ill—or when a caregiver must stop working to provide care—basic needs like food, utilities, and medications can become overwhelming burdens. No family should have to choose between keeping the lights on and caring for someone they love.
We health workers feel we have to do something. We have to take blood pressure, pulse, temperature, check peeing and pooping, and do assessments.
With approaching death, it isn’t so much doing something as it is just being there.
Emotional support, guidance for caregivers, and listening are our best tools. Addressing humanity is end of life work.
End of life work takes the focus off the disease and increases the attention on the humanity of a person. It focuses on the person that has a disease instead of the disease that the person has. I’m not saying you shouldn’t focus on the disease and its treatments. I’m saying focus on the human being that has a disease, and only THEN look at the malady.
Denial by the person with a life threating illness, denial by the caregiver, and I’ll even add denial by some attending physicians. Denial is often the reaction to diseases that have reached the point of not being fixable.
It can’t be me. It can’t be my special person. The doctors are wrong. If we do everything the physician recommends, we’ll be fine. If we do all the “right things” (eating, exercising, not smoking, not drinking alcohol, praying) everything will be okay. AND if the doctors are right in saying the disease isn’t fixable, then there will be a miracle and death will not come. Other people die, not me or even anyone close to me.
Veterans and their spouses are invited to join us on November 11th from 12pm – 2pm for a delicious complimentary lunch at Belle Reve provided by Quinlan Care Concepts/Karen Ann Quinlan Hospice. Each Veteran will also receive a commemorative certificate and pin.
Hospice takes care of people the doctors are having a difficult time fixing; people the doctors probably can’t fix. What does hospice do? Hospice helps people live with the greatest possible comfort during the limited time they have left.
It is interesting that a person who can’t be fixed, who is approaching death through disease, looks very sick and often frail in the months before their death BUT they don’t look like they are dying or at least match our idea of what a person looks like. They have probably entered the dying process in those prior months but they don’t look like they are going to die. It is only in the one to three weeks before death, that a person who is dying from a disease actually looks like they are dying.
People are generally referred to hospice in the last weeks of their life, which is way too late to help the patient and is often just crisis solving with the family.
In a recent story titled “Saying Goodbye at the Bedside,” by Barbara Karnes, RN, Award Winning End-of-Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner, and International Humanitarian Woman of the Year for 2018 & 2015, she talks about what you can do when you are with your loved one at the end-of-life. It’s an inspirational read which addresses topics you may be thinking and doing and gives you ideas of what you can do in those final, sacred moments with your loved one. Read the full story by Karnes here: https://bit.ly/41yjrWa
Barbara’s blog, “Something to Think About: A blog on the end of life,” which has a collection of valuable stories and end-of-life education materials for families and professionals, can be found here: https://bit.ly/3J2PW8N
In a recent story published by AARP, research shows the number of family caregivers has jumped to 63 million Americans, representing a 45 percent increase, or nearly 20 million more caregivers, over the past decade, according to a joint report by AARP and the National Alliance for Caregiving (NAC). This means roughly 1 in 4 American adults are caregivers, with 59 million caring for adults and 4 million for children under 18 with an illness or disability.
The new report, Caregiving in the US 2025, is a near 30-year research series that provides a comprehensive look at the state of caregiving in America, revealing how caregivers are taking on more complex responsibilities, often at the expense of their own health and financial security. Today’s family caregivers are younger, more diverse and more likely to be juggling multiple roles, with nearly a third caring for both children and adults.
Many of us know someone who is a caregiver or you may be a caregiver yourself. Many caregivers feel alone, helpless, confused, unprepared, tired and unable to provide for the needs of their family member or friend. Many caregivers put the loved one that they are caring for first all the time, which puts strain on their own mental and physical health. Often, people caring for another need help and do not know how or who to ask.
There are many ways to help support a caregiver…
Ask the caregiver how they are doing:
Acknowledge what they are going through and let them know you respect their privacy, but care about them and want to offer support and a listening ear. Caregivers tend to experience “caregiver’s guilt,” which is a feeling that they think they aren’t doing enough. Give them strength by reassuring them that they are doing everything possible for the person they are caring for.
Spend time with the person who is sick or injured:
Family caregivers are often the only link the care receiver has with the outside world. Offering to spend time with the person can be a gift to both the care receiver and caregiver. Bring a book or newspaper to read aloud, a game to play, a craft to do together, photos to share, a good movie to watch, or just a friendly ear for a conversation. And plan to stay a while, it will be appreciated more then you know.
Offer specific help:
Don’t say “call me if you need me,” it is too vague and may not appear to be a sincere offer to help. Often caregivers do not want to be a bother or may not feel they have the time to make a call, as it is one more thing for them to do. Be specific: tell the caregiver you are going grocery shopping and ask them what can you pick up for them, offer to make a phone call for them, cook a meal for the caregiver and care receiver a day or two each week (pick the days and stick to it, that’s one less thing the caregiver has to worry about those days), sit with the person who is ill, do research to find local and legitimate resources that would be helpful for the caregiver given their situation, take care of the person who is ill overnight, if you are able to do so, giving the caregiver a much needed overnight break or go with the caregiver to appointments and help the caregiver get the care receiver into and out of the appointment. You never realize how helpful a second set of hands is when you are taking someone who is dependent on you out of their home to appointments.
By offering to do something specific, you are communicating that you are really willing to help the caregiver. If you call the caregiver and they don’t answer, text them. Sometimes caregivers feel so burned out they don’t want to answer the phone or can’t answer the phone and texting is a quick way for them to respond back to you when they have a moment. They will be thankful you reached out and want to help in whatever way you can.
