How to Have A Good Death Under Hospice Care

Updated 8/16

Updated 12/2014

My mother lived with us for the last few years of her life. When she felt herself weakening and knew her dying process was beginning, she chose Mt. Hood Hospice for her final six months. I think both of us were amazed at the quality of care, the indelible compassion, the complete focus on the patient. There are free standing hospices. But my experience with hospice was in our home. Dying at home with hospice is so different than dying in a hospital. We can’t all die at home – sometimes there are reasons to go to the hospital. But for everything my mother needed, home was fine. Hospice was always there, always listening to her desires for her life – and death. Hospice is a place for a good death, a kind death, a peaceful death. It can be difficult for the family when someone is in their dying process at home. All I can say is that I always felt I had a backup. If something bad happened – and it did twice – I called 911 and then Hospice. Someone from Hospice was always there on the end of phone, even at 3 in the morning, to answer my panicked questions. If I had needed them to come and hold my hand, they would have. I have found Hospice care an enormous gift and will choose it for myself when my end time comes. Also realize, like everything else in life, that not all Hospices are perfect. If you don’t like the one you have, it’s ok to change. Again, a gracious friend with much more expertise than I has written this entry.

This entry is written by Emilie Cartoun, Director of Bereavement Services, Mt. Hood Hospice

Love and Death are the great gifts that are given to us; mostly, they are passed on unopened. Rainer Maria Rilke

In 2011, 44.6% of the total number of people who died in the United States were under hospice care at the time of their death. This is a staggering number, considering that hospice care has been a Medicare benefit for only 1 generation. Given this statistic and the growth of hospice services in the last 30 years there is every probability that you and/or someone you know will at some time be under hospice care. Here are some things to know:

What is hospice care?

Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well. Hospice focuses on caring, not curing. In most cases, care is provided in the patient’s home but may also be provided in freestanding hospice centers, hospitals, nursing homes, and other long-term care facilities.Hospice services are available to patients with any terminal illness or of any age, religion, or race.ⁱⁱ

Who pays?

If you are Medicare-eligible, hospice services do not usually cost you anything.ⁱⁱⁱ In addition, hospice services are covered by Medicaid in 47 states and by many private insurance companies. If you don’t have private insurance most hospice agencies will provide services anyway. Compassionate care for the dying, regardless of ability to pay, is considered a core hospice value. ^iv

You matter because you are you and you matter to the end of your life. We will do all we can not only to help you die peacefully but also to live until you die. Dame Cicely Saunders, founder of the modern hospice movement.

When should I consider hospice services?

The time to consider hospice is when your doctor diagnoses you with a terminal illness. You may decide not to elect hospice right away, but this is the time to find out about it. Many diagnoses qualify; cancer, dementia, heart disease, COPD, stroke, kidney disease, liver disease and ALS are most common. If you or someone you love has received a serious diagnosis, ask about hospice. For a variety of reasons your doctor may not always bring this up to you in a timely manner – it’s up to you to investigate. Hospice is not just for the last weeks or days! The sooner you elect hospice services, the more helpful it will be.

How do I know what hospices are available to me and how do I decide which to use?

You can choose your hospice. Regardless of what insurance you have or what hospital you are in, you can choose any hospice you want under the Medicare benefit.

While you can certainly google on hospices in your area, it’s a better idea to visit NHPCO.org and use their “Find A Hospice” tool.

Here are some questions to ask when deciding on a hospice:

• How long has the hospice been certified by Medicare? Is this an established, experienced agency? For-profit hospices and national chain hospices have skyrocketed in the last ten years.^v While all hospices answer to the same set of Medicare regulations, implementation of services varies widely.
• What is the average caseload of RN case managers? Do case managers care for 6-8 patients? 12-18?
• What is the default number of nursing visits, and how flexible is this number? Some agencies start out seeing patients once every 2 weeks, others start with two visits a week.
• What is the ratio between patients and on-call nursing staff ? Night can be a scary time. Will a nurse be available to come immediately, at any hour of day or night?
• How many active volunteers does the agency employ? Volunteers can provide essential services such as respite care, shopping, transportation, recreational activities and companionship. While all hospices are required to provide volunteer services, the scope of these services vary widely among hospices.
• Will you mostly be seeing the same team members? Continuity of care is an essential ingredient of successful health care. Will you have the same nurse, bath aide, social worker, chaplain and/or volunteer or will you be visited by a different nurse each time?

How does hospice care differ from conventional medical care?

• Hospice care comes to you. No more arranging for difficult and dangerous trips to hospitals and medical offices. No more waiting rooms. Your team comes to your place of residence – home or care facility.

• Hospice is interdisciplinary. This means your care is provided by a team of professionals who talk to each other about you on a regular basis. They know you, to the extent that you want them to know you, and they know each other. Your chaplain (who is optional, by the way, as are all your team members except your RN case manager) provides input to your case manager, your volunteer communicates with your social worker, your bath aide, homemaker, on-call nurse and Medical Director are in constant touch.
• You are the team leader. Your hospice team will, in an absolutely real way, look to you for leadership regarding your care. How much or little pain control do you want? What is most important to you and how can your team help? This is not about the medical profession telling you what is good for you, this is about what you want your last months, weeks and days to look like. Your team will make suggestions, but you are the captain of your own ship and your hospice team knows this.
• The hospice unit of care is patient and family/friends, often including pets.
• Hospice continues support to family and friends for as long as necessary after the death of the patient. Hospice services include bereavement counseling and support for a minimum of 13 months after the patient’s death.

A Good Death

Some would deny that there is such a thing as a good death, that death is a terrible system bug, a basic design flaw. For some, the extension of life at any cost is a moral imperative, an unquestionable value. For others, dying in one’s bed surrounded by one’s family, free of pain and with a sense of completion is a worthwhile goal. Hospice will never try to make such a decision for anyone. Hospice will do nothing with the intention of either hastening death or prolonging life. Hospice services can be revoked at any time, and ex-hospice patients readmitted. Think about it. Plan for it. Fill out an Advance Directive , make sure your will is up-to-date and your wishes known. Hospice can help, if you ask, and will not if you don’t. It’s your life, your death, your call.

Update

Hospice used to be either all volunteer/church supported or non-profit. In recent years there have been many for-profit organizations entering the space. It’s always hard for me to reconcile caring for the sick and dying and profit making. In for-profit there has to be a bottom line and usually that means cutting to the bone (just remember what it was like to be down-sized). I just read an article about this trend in my local paper. The typical for-profit hospice spends less on each patient, is less likely to send a nurse to a patient’s home in their final days and has a higher percentage of patients drop out of hospice just before their death (probably because they were pushed out when their care grew expensive). This doesn’t mean there aren’t good for-profits out there; I’m sure there are. But to me it means pick and choose carefully and give it some deep thought before deciding. And always remember: if you chose wrong, you can leave a hospice anytime and chose another. You will never be shut out. Here is a guide that my local paper recommended:

http://www.washingtonpost.com/wp-srv/special/business/hospice-quality/

Footnotes:

ii http://www.nhpco.org/sites/default/files/public/Statistics_Research/2012_Facts_Figures.pdf

iii The highest co-pay a hospice can charge under Medicare or Medicaid is $5.