There are so many things to consider when someone is at the end of their life. I was with my father when his doctor told him his condition was terminal and he had several months to live. It took some time for the initial shock to wear off–but shortly after that, it was time to start thinking about how things were going to be as his health failed. Here is a list and some information on the things that we learned and how we navigated this difficult journey. 
Top of mind for me immediately was my father’s care. He had been my mother’s caregiver and now they were both going to need help. Some of the options to consider are:
- Hospice
- Palliative Care
- In-home Care Services
Hospice care is a special kind of care that an individual and their family or loved ones can choose. Hospice care helps people live their final months in comfort and dignity, and it provides support and help for families and caregivers. Hospice care treats conditions and symptoms to increase patient comfort; it is not curative. Hospice services are normally paid for by Medicare. Veterans’ benefits are also available. Your hospice agency works with you and your family to identify ways to pay for services.
Hospice can work in a variety of settings including your home, Assisted Living, hospital, Nursing home, or hospice facility. Generally, a hospice agency will provide a team of people that will consist of:
- doctors or nurse practitioners
- nurses
- social workers
- home health aides
- spiritual caregivers
- volunteers
- Therapists
These people are trained to provide unique services that help comfort people during end of life. They work closely with the patient to make sure they are as comfortable as possible and have the emotional and spiritual support they need. They can help the family better understand the end-of-life process and how they can help support their loved one as it progresses. In general, the people that I have met who provide this care have a calling to do it and they also help others by providing the calmness that is very helpful to everyone involved. It’s equally important to talk to the hospice organization you are considering hiring to understand how your loved one's condition might be impacted by their internal guidelines. For instance, my father needed transfusions to reduce the impact of his disease and some agencies said they would not provide the transfusions while we found one that did provide it right in his home. His transfusions were not life-sustaining but for his comfort. Some agencies would not allow any transfusions.
We had two different hospice agencies in the home at the same time--one for each parent. This was because of the need for my father to get a blood transfusion. My mother’s agency was much smaller and at the end of her life they told us they would strive to be with us–and they were. My mom passed first and the nurse was there within an hour of us seeing the signs she was actively dying. It was a great comfort to us to have the nurse with us. My father’s agency was much larger and they had told us that it would be unlikely they would be with us at the end of life. It was good to know, but not comforting, however, he needed the transfusions so he could manage his pain levels. More things to consider and questions to ask when you start working out the details of hiring an agency.
Palliative care
Palliative care is a specialized type of medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve the quality of life for both the patient and the family. If you have Medicare Part B (medical insurance), it may cover some palliative care treatments and medications including visits from doctors, nurse practitioners, and social workers. Medicare does not use the term palliative, so coverage is provided by standard Medicare Part B benefits. The palliative care provider will bill Medicare for services provided. It is important to understand what copayments or fees, if any, you will be asked to pay. Be sure to ask good questions to understand what might be expected. As with any insurance situation, Medicare Advantage programs or other payor sources may also pay. Be sure to talk to your insurer.
Unlike patients in hospice, you can still receive life-sustaining treatments while in palliative care. Palliative care can be found within many organizations including hospice. You may also find this care at clinics, or hospitals that may be treating someone for a specific serious condition like cancer or heart disease.
In-Home Care Services
As my parent's health failed we eventually needed the help of a licensed home care provider. (These services are generally not paid for by insurance or Medicare. My father was a veteran and he did get some financial support from the VA. It never hurts to ask various payor sources including Medicare Advantage providers.) The home care provider was able to help in a variety of ways. My sister and I were passing medications as necessary and helping with their basic needs. At first, when the caregivers started coming to the home they did cleaning, cooking, and other tasks which allowed us to spend more time with our parents and guests. There were many guests at the beginning that wanted to visit our parents and the caregivers helped us much like one of the family. Over time their care needs increased and the caregivers had to give medications and work through the night assisting them. The home care company's nurse set up the medications ordered by the hospice agency's medical team thereby allowing the caregivers to give the meds. This included pain and anti-anxiety medications that helped our parents cope.
Looking Back
I have to say that I do not know how we would have navigated the end-of-life journey without the help of all of the people involved. Having time to spend with our parents and allowing a caregiver to do things around their home was wonderful. These were the last hours we got to spend with our parents and I still recall the priceless discussions. One regret was not starting hospice sooner for my mom. I think she would have benefited from some of the non-medical aspects like talking with the chaplain, therapy, and social support. Many people look at hospice as a signal they are “giving up” and they fight it–even for a loved one. In those cases maybe starting palliative care would be a softer way of starting the end-of-life process. For almost everyone, hospice is a very emotional subject with very personal feelings toward death and dying. Let me say, be kind to each other and when possible listen to your loved one who is dying and, as best you can, honor their wishes.
Acknowledgments
Get Palliative Care
Minnesota Network of Hospital and Palliative Care
American Cancer Society