Today on All Home Care Matters, we are going to be talking about how hospice helps families. If you want to learn more about hospice, you can watch or listen to our previous episodes, What is Hospice, or What is Palliative Care. You can find them on our website, wherever you get your podcasts, or on our YouTube channel. Today we’re going to go over what hospice is, how it began, and how it is helping families today. Now let’s move on to the rest of the show.
The American Cancer Society describes hospice care as a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness. Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible. Hospice’s goal isn’t to treat the disease but to treat the symptoms and make the end-of-life as comfortable and fulfilling for the patient as possible.
The founder of the first modern hospice, Dame Cicely Saunders, said that “You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully but also to live until you die.”
Dame Cicely Saunders established the first modern hospice in West London in 1967. She did not invent hospice, as it had been around for some time, but she did make it what it is today. Before her, those that were dying and in pain had to wait until their painkillers wore off before they could be given their next dose. People feared addiction for those that were suffering, which seems odd today, but before 1967 was commonplace. Dame Cicely Saunders saw that her dying patients were being forced to suffer through their pain until their inevitable deaths and worked to change how end-of-life care was managed. She created an approach that emphasized pain management, emotional and spiritual support and family counseling. She insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments, and abolished the philosophy that the patient must be cured, and if they were unable to, they must be lied to about their prognosis.
One of Dame Saunders patients transferred from another hospital to her hospice care facility said that “[the previous hospital] used to see how long I could go without an injection. I used to be pouring with sweat because of the pain. I couldn’t speak to anyone and I was having crying fits. I think I’ve only cried once since I’ve been here . . . The biggest difference is feeling so calm. I don’t get worked up or upset."
Dame Saunders’ Hospice made such a difference in the end-of-life care of patients, and it has only improved since then. Today, hospice’s philosophy revolves around palliative and not curative care. It focuses on the care and comfort of the patient by managing the symptoms and not the disease. Its goal is to improve and uphold the patient’s quality of life instead of the amount of time the patient has left and neither postpones nor hastens death. Hospice also aims to educate and support the patient, the family, and other caregivers throughout end-of-life care.
When thinking about hospice care for your loved one, first you must determine their eligibility. A social worker will likely come and assess your loved one to see if they are ready for end-of-life care, but there are a few things you can check on your own. If their doctor has anticipated six months or less for the remainder of your loved one’s life, assuming the illness takes its projected course and if your loved one chooses to forego life-prolonging, aggressive treatments for the terminal illness and related diagnoses, they most likely qualify for hospice.
Once your loved one has been accepted into hospice care, they will receive care wherever they are, in their own home, in the hospital, in a facility, or any other place they may be. They will be given a primary caregiver, along with hospice staff, and will have the option to have 24/7 care. They will also be monitored by an interdisciplinary team and have an end-of-life plan tailored to fit their needs.
Hospice supports not only the patient but everyone involved. They will help you through the end-of-life process, so you don’t have to go through it alone. They can give you resources and suggestions that can help you make the most of the time you have left with your loved one.
As the older population in the United States grows, more and more families are going to be considering end-of-life care. In 2015, 1.43 million Americans received hospice care and that number is steadily climbing each year. Hospice care requires 24/7 caregivers and a caregiving team involving a somewhat large amount of people. It can be quite expensive, and that financial burden may be weighing heavy on you right now but try not to worry about the money too much. There are a few ways your loved one can get free care or help covering the costs of hospice care. If your loved one is on Medicare, they can be provided hospice care at no cost to them. Medicare will cover 100% of the costs. Medicaid and private insurances will cover the costs, but you will have to talk to your insurance agent and doctor to see what they will cover. Some hospice care groups offer discounted rates or even free care, so be sure to check with the hospices in your area to see what their rates are and how they can work with you. Some organizations and non-profits will help you cover the costs. You can check with your local senior center or united way for more information on programs or resources they offer.
There are non-profit and for-profit hospices. They both run on the same philosophies and carry out treatments the same way, but they differ on the financial side. The Medicare Hospice Benefit established in 1983 provides Medicare beneficiaries with access to high-quality, end-of-life care services. This benefit is what allows Medicare to completely cover the costs of hospice care, but it also recognized hospice care as a viable concept and form of healthcare service for terminally ill patients in the United States.
Hospice took a while to gain traction in the United States, possibly because of its philosophy to only treat the symptoms and not treat the disease, but by 1983, it was widely accepted in the country. With this benefit passed, millions of Americans were finally given access to quality end-of-life care, something many would have been unable to afford otherwise.
According to Crossroads Hospice, the biggest difference between for-profit and non-profit hospices is that non-profit hospices are not required to pay taxes to state or federal governments on the funds they receive from Medicare. Tax exemption is a standard of all non-profits and is not exclusive to hospice care. For-profit hospices are also prohibited from using donations to directly pay for patient care. Non-profit hospices mainly run on donations, holding fundraisers and soliciting donations from the community to pay for patients' care.
Since for-profit hospices are not allowed to use donations to pay for patient care, many for-profit hospices create a non-profit foundation that is separate from the hospice to collect donations. The for-profit hospice foundations must each have a specialized mission, like securing supplies to help patients with special needs or providing hospice education to area healthcare providers.
Regardless of whether the hospice is for-profit or not, you want to make sure you are selecting the right program for your loved one. Each hospice is different and has its own structure for care teams, programs, and even philosophies. When searching for a hospice provider, you should contact and interview several in your area before you decide on one. Your loved one’s doctor may also help you make this important decision by helping you figure out what the most important parts of care are for your loved one. For some, it could be having a nurse on hand at all hours, but others may only need a nurse at certain times of the day, if ever.
It is also important to note that hospice care may lapse if your loved one’s illness improves or your loved one outlives their prognosis with no changes. Especially now, hospice care providers are hard to come by. The Covid-19 pandemic has many hospice providers, as well as most other healthcare providers, severely understaffed and they are struggling to provide care to all the patients they already have, let alone prospective patients.
So please be patient during this process. Hospice care providers and other caregivers are trying their best to make sure your loved one has the best quality of life, but they are also doing the same for numerous other families.
Hospice cares for patients with serious illnesses and diseases at the end of life, but what does that really mean? A 2017 study by the National Hospice and Palliative Care Organization found that 27% of patients had been diagnosed with cancer, while 18.7% had cardiac and circulatory, another 18% had dementia, 11% had respiratory issues or diseases, 9.5% were stroke patients, and 15.6% had other unlisted illnesses or diseases. If your loved one suffers from any of these illnesses or diseases and has been told they are nearing the end of their time, hospice may be the right care provider for them.
Choosing the right hospice for your loved one and yourself gives your many things: care support, the backing of an expert team, respite care, grief support, help with planning, less stress, better health, and peace of mind. Since hospice care is provided wherever the patient is, oftentimes it is in their own home, and the family, you, are the caregiver. According to Daily Health Wire, hospice care teams visit the patient in the home on a routine basis to assess, monitor and treat symptoms, and they train the family and loved ones how to care for the patient when medical personnel isn’t around. When care is provided in a nursing home, the hospice team provides care in addition to the care the patient receives from nursing home personnel.
Hospices don’t just have nurses, but they also have other trained professionals, including physicians, social workers, chaplains, and personal care specialists. Many even have volunteer support. The entire team works with the patient to meet their physical, emotional, social, and spiritual needs, along with the family, to improve the quality of life for both you and your loved one.
As a caregiver, you know how important is to take care of yourself while taking care of your loved ones. If you need help figuring out ways to help manage your stress or balance caregiving with your life, we have several episodes on the subject that can be found on our website, YouTube channel, or wherever you get your podcasts. If you need a break, whether you just need an hour to run errands or you need a few days away for whatever reason, respite care is something you might find useful.
A hospice caregiver can come into the home and watch over your loved one for a few hours while you are away. Many hospices also have a facility where your loved one can stay if you need to leave for a few days. Check with the hospice providers in your area to see what is available and to ask if they are able to provide these services.
We also need to make mention that when a family has hospice service that the hospice provider does not replace the home care support that a family may already have in place. This can become confusing for families and this is something that we have found families that we provide care for have thought that by having hospice come on-board to provide services for their loved one that they would no longer need or require home care because of this. This is not accurate.
When a family has hospice care this does not replace the home care support that they had prior to hospice. Whether it is hospice, home health care, or home care all three of these professions and services work independent of each other. If you have more questions or are interested in more information make sure to visit our website and there you’ll find a secure fillable form that you can fill out and someone will reply to you and answer any questions that you may have or provide any resources or information that you request.
Linda Hickey, the daughter and full-time caregiver of Ruth, appreciated having a respite-care option. "My sisters and I had split up the responsibilities, but at times, it still felt overwhelming. Caring for her full time was exhausting," she explained. A local hospice cared for Ruth as a respite care patient, giving the family time to recharge. Time away, even just a little bit, can help you come back refreshed and ready to continue caregiving.
Another thing that hospice provides is grief support. The end-of-life stage is difficult for both you and your loved one and the right hospice can help you both through it - through emotional and spiritual support. Social workers, chaplains, and volunteers are all available to help your loved one come to terms with their situation and help you through the bereavement process. Even once your loved one has gone, they usually offer support to you and your family, because they treat each patient as an individual, and not a statistic.
They can also help with the planning that may be overwhelming for you. They can help with the power of attorney and a living will, as well as helping with the creation and follow-through of an individualized care plan.
Having a hospice provider on your side alleviates some of the caregiving burden and stresses that come with it, allowing you to enjoy more of the time you have with your loved one, rather than worrying about caregiving and other responsibilities.
Perhaps one of the greatest things that hospice provides is peace of mind for both you and your loved one. With hospice, you know that someone that cares is always on hand, or just a phone call away, allowing family members the chance to spend precious quality time with their loved one. And even during this sad and difficult time, many families have made great memories with their loved ones, thanks to hospice care.
Finding the right hospice provider for your family and your loved one can make all the difference in their lives, so don’t wait too long. Get started today so you can enjoy tomorrow with your loved one.
We want to say thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode and please make sure to share it with them.
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