I’ve been putting off writing this post because I have so much to share and am overwhelmed in terms of where to start!! The truth is that while many people think they know what hospice care is, they typically have a number of misconceptions that lead them to only see part of the puzzle. In my 9 to 5 job, I’ve found that even health professionals, physicians and those working in senior care don’t know when someone really can get hospice care and unsure of what it really entails and therefore, a whole chunk of the elderly population die in pain (both physical, emotional, and spiritual pain) and alone. Wouldn’t it be nice to have someone by your side when death is near?
Today’s post is very personal to me. I referred my grandpa to hospice care on a Thursday afternoon and had scheduled an appointment for him to be assessed the next day, Friday afternoon. My grandpa passed away that Friday morning. I wish I knew about hospice care a year earlier (after his stroke) and referred him then. My hope is that through today’s post you’ll know what hospice is so that when your grandparents, parents, friends or neighbors get closer to end of life, they and you will know hospice is an option. If you have any questions after this post, please email me firstname.lastname@example.org. They are definitely welcome!
The definition of hospice care
Hospice care is a service that is available to people at the end of their lives. Despite notions that hospice is only for people with cancer, one can be admitted into hospice care for dementia, heart disease, stroke, HIV, liver disease, pulmonary disease and more. What makes hospice confusing is that the eligibility for hospice varies for each disease. “Debility” which is used to describe general decline can also be used as a diagnosis for hospice care. If you sense that your loved one is declining and losing quality of life, it never hurts to call your local hospice and ask questions.
I was running with a friend a few months back and on this long run, I asked my friend what he thought hospice was. Interestingly enough, my friend assumed that it was care for a person in their last days/hours or hours. Hospice is not meant for the last days. If you can say that you wouldn’t be surprised if your loved one passed away within six months or less, hospice is definitely a possibility. When someone you know has frequent hospitalizations, experiences falls and noticeable physical decline/quality of life, you really should look into hospice care. Just as if you would go to a podiatrist if you had flat feet (raising my hand!), if someone is nearing the end of life, you want to look to the hospice professionals. They are the experts in keeping people comfortable and have a lot of experience in walking individuals and their families through a scary and difficult time.
The one thing that I absolutely love about hospice care is that you don’t have to pay for it. If your loved one qualifies for hospice care, both Medicare and Medicaid have a hospice benefit that covers the cost of hospice care. Some insurances cover hospice and if all else fails, many hospices raise funds to be able to support those who do not have insurance. The other thing to remember is that unlike other Medicare benefits, there is no limit to how long a person can be on hospice care. Although a doctor must deem that a person has six months or left to live, a seriously ill person can access hospice care for over six months. With such great care and attention, some patients live longer than even a year or two and can still qualify and benefit from hospice care. Here’s a few of the major benefits covered under the Medicare or Medicaid Hospice Benefit. Pay attention!
- Home visits by a medical team of doctors, nurses, social workers, chaplains, nursing aides and volunteers. When someone gets hospice care, they have a whole team that cares and walks with them through this journey. Hospice serves as a “hospital on wheels” preventing the need for future visits to the hospital and allows someone to get care in their home. Hospital visits are traumatic for anyone, but for the old and ill, it is even more difficult and can often lead to sharp physical decline. With hospice, care is brought into the home, whereever home may be.
- Personal attention for physical, emotional, and spiritual matters for both patient and family. When someone is nearing the end of life, it’s important that they get close medical attention. To have a nurse visit at least once a week or more if necessary can be helpful in recognizing possible medical issues before they become worse. Nurse aides can help bathe a person, change the bedding and more. Social workers often help with the emotional challenges related to death. It’s at the end of life when people start thinking about the fact that they haven’t resolved things with their ex-wife or child. Or that they feel guilty for a deep secret that they’ve kept for years. Social workers help patients and families work through this. In addition, they help with many practical things that can stress a patient and family such as creating advance directives, getting DNRs in place (do not resuscitate) or creating funeral plans. Chaplains help to talk through what is most important to a person and their family and they are there for spiritual support. Volunteers provide respite for families when they need some rest and can also serve as another visitor for the patient. And don’t forget the doctor who coordinates and directs the care. With all these medical professionals and visits, it’s not wonder that studies show that people on hospice often live longer and better quality of life than those who do not receive hospice care. Studies have also shown that hospice care also benefits the wellbeing of a spouse and family as they experience the death of a loved one.
- Medical equipment necessary to help improve quality of life for the seriously ill person. Hospital beds, wheelchairs and walkers are all included if they can help make the person more comfortable! And yes, this is covered and paid for under the Medicare Hospice Benefit.
- Medical supplies such as gauzes, diapers, etc.
- 24 hour support. While a hospice worker may not be in a patient’s home 24 hours a day, support is still available 24 hours. 1 AM, 4:33AM? 2AM? If a patient or their a caregiver or family member needs help, they can call hospice at any time for advice. And if necessary, a hospice nurse is available to make a home visit at any hour of the night. This support can often ease a lot of the anxiety that caregivers experience when someone who is very ill lives at home with them. What do I do with something happens? Once hospice care comes in, help is a phone call away.
- Bereavement care for loved one for at least 12 months following the death of a patient. Losing someone can be difficult. Another great thing about hospice care is that it really does provide support for the family. After a patient dies, hospices are required by law to follow the family with support after the death of that loved one. This may include phone calls to check up, letters throughout the year to help the family member through anniversaries (first birthday without their loved one, first holiday without their loved one, etc.)