Tag: end of life care

End-of-Life Education

Hospice vs Palliative Care

Jaime Lee Hazard

When you or someone you care about is faced with a serious illness, there are a lot of unfamiliar and confusing terms to acquaint yourself with. Sometimes there are subtle nuances between terms that should be explored because knowing the difference could impact one’s quality of life. Hospice and palliative care are two distinct entities that are commonly, and incorrectly, used synonymously. This has led to people not getting the care they need.  

Here are the clinical definitions of each:

Palliative: “Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.” – www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

Hospice: “Hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.” – www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

I know, these definitions may still be rather muddy. This is how I look at both of them and hopefully this will help to add some clarity to all of the confusion. Palliative care comes from the word “palliate” which means to ease. Palliative care is all about easing the symptoms of illness, plain and simple. A patient’s age, prognosis or how long they have left to live has no bearing on whether or not they can receive palliative care. This means that if a person falls ill and they need further assistance with symptom control than what they are receiving from their regular health care provider, palliative care might be a wise course of action. Patients can still pursue all of their life saving treatments yet still take advantage of palliative care. It’s just there to help “ease” symptoms, whatever they may be. And more often than not, it’s covered by insurance, so people just need to ask for it. Why people often don’t pursue palliative care is because of the misguided notion that you have to be elderly to qualify or that it’s the same as hospice. And the first thing that people think of when they think of hospice is giving up. Neither hospice nor palliative care should ever be considered “giving up” on life though. 

Instead of focusing on treatments to prolong life, like palliative care, hospice is about focusing on the quality of time one has left. A person is eligible for hospice when they have six months or less to live. Contrary to some beliefs, hospice does not hasten a person’s death through the use of pain medication. Let me be very clear, disease progression is what causes the patient’s decline, all hospice does is manage the symptoms of disease with the hopes of the most comfortable death possible. And just because a person is on hospice does not mean that they can’t improve and go off of hospice care. To the contrary, I’ve known several people, my own father included, who went off hospice because their health improved. So let it be known, hospice is not a death sentence. It’s sad to think of how many people are deprived of all of hospice’s wonderful comfort care services until their last few days of life. 

So if you ever find yourself or a loved one needing medical support, regardless of age or prognosis, there are options that you may not have realized were available to you. Just ask your health care team for more information.

Journey Through Life & Death

A Cautionary Tale

Jaime Lee Hazard

I filmed a video that with help anyone who is trying to figure out what to do with the debt incurred by a loved one. Plus, my call to action when it comes to rehabilitation/skilled nursing facilities. If you have a rehab story that you’d like to get out into the world, please contact me. I’d love to interview you for my channel. Perhaps someday, I can get it seen by the right people who are in the position to push for positive changes.

Here is a synopsis of me and my father’s skilled nursing nightmare:

  • He is transferred to Gateway Rehab and Healthcare in Lenoir, NC from the hospital with absolutely no notice. He was swept away and the family was not notified of when and where he went. He was just gone from his room one day.
  • At Gateway, he is quarantined for 14 days with no visitors and if you don’t have a working cell phone, you’re not able to contact anyone because there is no phone in the room. This was extremely isolating for my father.
  • For the first time in his life, he develops anxiety and cannot sleep. All he asks is for them to raise his head above the rest of his body but he is ignore and instead medicated.
  • Everyday he is left to lay in his own waste for hours. If he is placed on the toilet, he is left there for long periods of time.
  • His call button was not even plugged in for the entire 21 days and the staff was aware that it wasn’t plugged in.
  • He is not bathed. He asked to take a shower but was told that the showers are down the hall but that he is not allowed to leave the room because he might spread Covid, despite being tested for it everyday.
  • They tried to extend his stay by saying that the facility was going to be completely locked down to people going in or out because there was a Covid contact somewhere in the building. I called Medicare to ask what happens if the facility extends his stay past the covered 21 days and they told me that my father is responsible for paying a $183 co-pay for each extra day that he stays. They also reminded me that they cannot keep anyone. Skilled nursing is an option. I promptly call my father back to tell him that they are not keeping him any longer than is covered 21 days.
  • My phone calls and emails were completely ignored. The only time someone contacted me with any information was 3 days before he was set to leave. That was a nurse and a social worker telling me that my dad is in terrible shape and needs to stay with them. His reported condition is that he cannot use a walker and can only use a wheelchair because his body is so broken, he can’t toilet himself, he is on about ten medications and needs oxygen continuously. The social worker would tell me something about his condition (like that he had a urinary catheter) and then the nurse would backpedal and say that wasn’t totally true. I told them that he was leaving regardless of their recommendations. They said they were willing to only give him 10 days of medications and after that he was on his own. They were not prepared to give him a wheelchair so that it would take about a week to get one sent to his temporary home. For the entire conversation they were going out of their way to let me know what a huge mistake I was making in not just transferring him to their nursing home.
  • Ironically, after my phone call with the nurse and social worker, my father saw a physical therapist for the first time in his 21 day stay.
  • While he was at Gateway, he developed bedsores from not being moved. This is a person who just was hospitalized with a systemic blood infection.
  • When he left Gateway he continued to make very slow progress at my step sister’s for two weeks until we moved him to a private care home in NY. The first night that he was there, Judy (the owner of the home), showed him how to use a walker, had him putting away his things, using the toilet on his own and only using his oxygen when he was feeling winded. That was all within the first night of being there! All he needed was someone to show him how to walk with a walker and encouraged him to try. And all Gateway did was break him down and told him he would only get worse and he believed it.
  • It’s now been less than 4 months since leaving Gateway and he is walking without any assistance, quit smoking, no longer needs oxygen, the only meds he takes is an inhaler, is going to the bathroom and showering on his own and is happier than he’s been in a long time.