How Hospice Care Can Make or Break Your Death

This is a guest post by Jill Schock. The views expressed in this article do not necessarily represent those of TalkDeath. 

Utilizing hospice care is more acceptable in our society now than it ever has been, and more Americans are becoming aware that hospice care is covered by Medicare. However, the majority of patients and their families still aren’t getting the most out of this benefit. If you ask people about their experiences with hospice, you’re likely to get mixed reviews. 

Hospice, when utilized to full capacity, should always facilitate a “best case scenario,” where both the dying person and their family are well cared for by the hospice team, using all of its resources. A good hospice team will be able to manage the patient’s physical symptoms to keep them comfortable and out of pain, while also managing the emotional symptoms of grief felt by both the patient and the family. Even though these resources are available for every hospice patient, we continue to hear about hospice care resulting in a bad death. So, what are some of the factors that contribute to hospice ‘making or breaking’ someone’s end-of-life care?  

Note: Some of this article refers particularly to the American hospice system, but is still relevant to other countries where hospice care is offered.

Hospice Care for a Better End-of-Life

Why Planning Ahead For Hospice Matters

Unfortunately, many people don’t talk about hospice until their doctor is telling them, “there’s nothing more we can do.” Dying is seen as a medical failure by professionals, and because of this mentality, hospice is often brought up too late to ensure that the patient receives good care. A patient that is hurriedly signed on to hospice care in the final days of their life is likely to have a chaotic, rushed, and confusing experience where neither the patient nor the family have time to prepare, cope, or process properly.

Compare this last scenario to one in which the doctor starts a conversation about end-of-life earlier. With 3-6 months to live, the patient can be placed in hospice – with all of its resources made available – have time to get their affairs in order, and spend time with their loved ones. 

Non-Profit Hospice Versus For Profit Hospice

Since there are so many different hospice companies offering a mixed bag of quality, hospice support can be unreliable and unpredictable. Especially when options have not been discussed previously, patients and families can be unaware that not all hospices are created equal. Each hospice operates as a private business that can choose to be for-profit or non-profit. Non-profit hospices are usually a better choice for patients because their ethical obligations are to the patients only; nobody is cutting corners to put more money in their own pocket. You should avoid for-profit hospices at all costs (no pun intended), as they will almost always provide less in-home nursing, bathing, social work, and spiritual care visits. They may also offer the patient less supplies such as wipes, diapers, bed pads, mouth swabs, etc. For-profit hospice facilities often try and pocket money where their can, putting a large financial strain on families who end up having to buy their own supplies.

Is Hospice Care Covered by Medicare?

Hospice is paid by reimbursement through Medicare. In recent years (more specifically after the Affordable Care Act was passed), Medicare has become very particular regarding not only what diagnoses are considered hospice appropriate, but also dictate the specific language that doctors and nurses need to chart to note the patient’s decline. You can no longer die in hospice from old age (common diagnosis used to be “failure to thrive”). You must be qualified as someone who has an “end-stage” illness, including end-stage cancer, end-stage Alzheimer’s/dementia, end-stage Parkinson’s etc,.

 Hospice workers are overworked, underpaid, and are not treated with the respect they deserve. 

Today, nurses are under a great deal of pressure to prove that the patient continues to qualify for the benefits by charting signs of decline; Medicare is often updating and changing those guidelines, making the process that much harder. Because of this, we sometimes see patients being discharged from hospice and being left on their own without support. Furthermore, we are seeing more elderly people die without support because they don’t qualify as having an end-stage illness.

The Reality of Hospice Staff

Because of how hospice is paid for, facilities often do not hire full-time, benefited employees. Instead they hire what’s called “per-diem” employees from a pool of clinicians on stand-by to use as needed. As this type of employment is precarious, employees tend to be run down from keeping several jobs to make ends meet. This can result in patients receiving a less consistent care-team than they deserve. It can be frustrating for the dying and their families when breakdowns in communication occur, or vital components are missed or overlooked. One would assume that the healthcare system would want healthy and happy end-of-life care employees, but that is not always the reality. Hospice workers are overworked, underpaid, and are not treated with the respect they deserve.

What to Consider when Selecting a Hospice Facility

What helps support good hospice care? A non-profit hospice with full-time employees (with benefits), who have a good relationship with their administration and agree on the common goal: to help patients through their dying process with the best resources available. A hospice that focuses on the well-being of their staff, often translates into superior care for patients and families. As such, look out for hospice facilities that make self-care resources available to their employees as well.  It’s simple: happy employees = happy patients = better dying. 

How can you Advocate for the Best Possible End-of-Life Care?

• Talk to your doctor early on about your end-of-life care options in order to enter hospice care as soon as possible, when the time is right.
• Interview at least three hospices in your area; do not simply select the facility that is suggested to you by the hospital or doctor. Interview the hospice team as a whole to determine the level of care you will receive. 
• Be aware that you have access to a Registered Nurse case manager, Licensed Vocational Nurse, bathing aid, social worker, spiritual care counselor, and a volunteer. You want to know these are happy and healthy employees who are going to provide consistent care during you or your loved one’s dying process. 
• Ensure that the hospice you choose will deliver all the medications and supplies you need in a timely manner.
• Have a conversation with them about how they manage their on-call service. Hospice should be 24/7, but some companies use a third-party call service that can delay a nurse being made available when you need one. A good hospice will have an in-house on-call system and be able to respond in time. 

Conclusion

Hospice is still evolving, but it is also a significant resource for the dying that allows people to have some control over their own death. As such, it is important to be informed, and remember that you do have options. As much as the prospect of death can make you uncomfortable, you will find that arming yourself with knowledge of the resources available will take away the uncertainty from which your discomfort stems. You only get one life to live, and only one death- let it be on your terms. Be a strong advocate for your own end-of-life care because everyone deserves a good death.

Editors note: Medicare.gov lets you search and compare for-profit and non-profit hospice centres in your area.