I just lost a close family member to cancer. She was old, she had been ill a long time; it still hurts. But in her dying, she made some wise choices. She was a very bright woman, and retained her mental capacities right up until the end. This gave her the opportunity to decide how she would approach death. She chose to enroll in hospice…
Hospice is widely misunderstood, partly because of the way we misunderstand death in the U.S. Instead of an inevitable part of life, death here is seen as an enemy to be fought at all costs, no matter the futility. Intensive care units, which were designed to care for people with a severe but potentially curable illness are full of the incurable—people on ventilators who will never breathe on their own again, who will never have a significant interpersonal interaction again.
Some of this is due to unrealistic expectations of family members, and some is due to physicians either failing to address end of life issues, or wanting to “try just a little bit more”. Either way, a lot of unnecessary suffering occurs near the end of life.
The HIV epidemic brought a revolution in end-of-life care to the U.S. Early in the epidemic, AIDS was universally deadly, and the deaths often happened badly. People would end up in the hospital, surrounded by strangers, with their closest friends unable to visit because of unconventional relationships (i.e. most were gay and their partners were shut out by the system). AIDS patients often died gasping for breath from pneumonia, had ceaseless diarrhea, blindness, and delirium. It was an awful death.
Until folks started reinventing the concept of hospice, initially in networks of volunteers. Patients would stay home, cared for by friends and volunteers, with medications given to ease discomfort.
Today, palliative care and hospice are vigorous specialties. They have become more widely accepted by patients, but misconceptions still exist.
Hospice care is aggressive, but not in the same way as standard medical care. The starting assumption is that a disease is incurable and the patient is going to die. Since the disease is ultimately going to win, the only battle left is the symptoms. Pain, breathing difficulties, loneliness, grief are all treated aggressively by a multidisciplinary team that usually includes doctors, nurses, clergy, and others.
I’ve been treating my own patients at the end of life for a number of years. Not all internists have the experience for this, but I hate to turn a patient over to a stranger when they need me the most.
I just returned from the bedside of a patient of mine. She took a bad turn a few days ago, and she and her family elected to enroll in hospice rather than engaging in a painful, futile battle on a ventilator. As is common, once she decided on hospice, she perked up a bit and was able to say goodbye to her family. Now she’s lying in bed comfortably. She probably won’t last the day. Her family is pleased that she is comfortable, and while they are appropriately sad, they are satisfied that she is receiving the best treatment possible.
As an internist, it’s actually quite rare to receive thank you notes from patients. You may pull them back from the brink of death, maintain their health, counsel them in times of need, but a card isn’t part of the thanks. Unless someone dies. I have a file full of thank you notes from families whose loved ones I’ve cared for at the end of life.
Dying is an important part of life; it’s an opportunity to help someone remain peaceful and comfortable as an inevitable end approaches. It’s also a time when you can make someone more miserable than they could every have imagined. When a fatal disease is diagnosed, patients and their families need close guidance to assure as much as possible that they follow the path of peace and comfort, rather than pain and fear.
March 11, 2008 at 5:52 pm
I have had good and bad experiences with hospice. My last experience, the family was sold on the idea of their family member getting hospice, even though their loved one was a patient in a nursing home. They were told that the hospice nurse would be there at the end of life to see there was as little suffering as possible.
On the Sunday afternoon when the end was obviously near, the hospice nurse on call was contacted. She proceeded to call the nurses desk at the nursing home and asked the DON to give the patient more morphine. I stayed with the family for the next 3 hours until the end. The hospice nurse never came.
I have had good experiences too, but the point is, like with everything else, check references. Good hospice, good hospitals, good doctors are the rule, in my opinion, but in this situation, by the time you learn from personal experience, it’s too late and you don’t need them again. (Hopefully).
March 11, 2008 at 11:10 pm
Hospice is certainly a “choice”.
From my experience as an RN now for 22+ years–most experiences I have witnessed have been good. But Hospice is not for everyone. It is wonderful we have choices, especially when end of life decisions must be made.
Thanks for your post–it was very thought provoking.
~Lisa
http://lisaheidrich.wordpress.com
March 12, 2008 at 1:00 am
My grandfather and grandmother both died in a Hospice; grandfather from a combination of COPD and other issues and grandmother from some form of cancer/respiratory issues, both of them heavy smokers. While I was very young at the time (8-10 years old), I feel that Hospice provided a great service for them. And when I worked in a pharmacy near two Hospice locations, we did a lot of oxycodone and morphine sulfate concentrated solutions; I’m pretty familiar with the whole system.
Hospice is arguably sad, but the fact of the matter is that it’s a necessary service. It’s an acceptance of inevitability, a willingness to understand the reality of a situation, that fuels Hospice. And I can never, ever speak badly about that.
March 14, 2008 at 10:49 pm
Excellent post on an oft misunderstood area of medicine. I am glad to hear that you are actively involved in caring for your patients that are on hospice services. As a hospice/palliative medicine physician who makes home visits it is a good thing when community docs are able to do that, but I know time pressures are tough.
#1 Sorry to hear the hospice nurse never came. Hopefully you got some sort of explanation.
#3 I think the process of loss and dying has more sad moments and that hospice is really more of a tool to help make some of the more difficult moments not so difficult. So hospice itself is not sad, more so that it makes us think of loss and death which obviously makes us sad.
March 19, 2008 at 6:28 am
= informative, thanks.esply cos at Vskpm City India
i am planning to start a small 10bed hospice for terminal stage IV HIV’s.and as pilot center for other workers to see and start their own at their places.keep me in mind, who wish to help w practical advice.pradhangeorge@gmail.com
May 7, 2008 at 9:56 am
as a gp/ind i say it is a difficult choice , a matter of conscience, concern, to care for at any cost expense time or effort or just to leave a terminal ill loved person. when rare cases of recovery against all odds abound. the idea of applying ‘triage’ is normal in GP. but the law? society? relatives? compel upto the very last . who will switch the lifeline off??? [PS. my plans for a Hospice are going at a snail pace.]