I hadn’t been on the North wing of the nursing home in a while, and when I saw Juanita Johnson sleeping in a geri-recliner, I turned to the nurse, aghast. “I barely recognized her! She’s lost so much weight!”
“I know. It’s terrible,” the nurse replied. “We’re having her evaluated by hospice today.”
Ms. Johnson was accepted into the hospice program, and died two days later.
I’ve seen many late referrals to hospice in my years as a nursing home psychologist. It’s the rare older resident who wants every treatment possible late in life. Most of the time, the resident is going along with the program, waiting for the doctor to say that it’s time to rethink how we’re handling things. The resident is waiting for “the conversation,” but all too often the conversation doesn’t happen until it’s too late. The resident’s last days and months are ones of unpleasant medical interventions rather than a time of comfort and emotional support. This affects their family as well, with the emotional ripples of a “bad” death living on for years.
It’s not so easy to determine when someone is dying, but this week’s article by Paula Span in the New York Times, Interactive Tools to Assess the Likelihood of Death, discusses the use of interactive tools and how they can help us make better end-of-life medical decisions. The tools are posted at ePrognosis.org.
Coping with Grief, for Staff Members: Conversation with grief expert Courtney Armstrong, LPC
Beloved residents decline and then die, their families stop visiting the nursing home — coming to terms with these losses is an unacknowledged challenge of our work. Especially helpful for training directors, new employees, or those struggling with a current loss either on or off the job, this 20-minute audio will help staff members:
- Understand their feelings
- Recognize symptoms of grief
- Identify coping skills
- Assist each other in creating a supportive community
Includes FREE:
- Signs of Grief checklist
- LovingKindness Meditation Sign suitable for posting at the nursing station
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So true! When I worked at a nursing home I urged the regular CNAs and Nurses to let me know right away when they notice any changes with the residents. Changes in appetite, mood, behavior, level of dependance can be seen fairly quickly. Being proactive is key to preventing weight loss and death. CNAs and Nurses work closest with the residents so they should notice even the most subtle changes. I can’t stress enough how much teamwork and communication is involved in caring for the elderly. One person can’t do it all. We need to work together and make those referrals! Hospice can really provide the TLC that is needed during end of life.
Thanks for commenting, Wendy. I agree, the teamwork is important because we all have different pieces of information based on our varied training. It’s when we put it all together that we have the best picture of what’s going on with the residents. As a mental health professional, I might not know what’s going on physically with a resident with a mental status change, but I can certainly notice a mental status change and report it to the medical staff. With residents who are nearing the end of their lives, the question is which staff member is going to discuss this with the resident and their family, and when. The medical doctor is the logical choice for taking the lead on the conversation, but due to possibe time constraints, discomfort with the topic, lack of a close relationship with the resident, etc, the conversation might not occur with enough time for the resident to benefit from hospice. Communication among the team can facilitate end of life conversations, with different disciplines concurring about the changes in the resident earlier in the process, and perhaps pairing team members to talk with the resident and family members.
I am not being very objective here tonight but let me say that it still infuriates me every time I think of someone I know who was referred to hospice a tad too late.
I think sometimes providers’ own death anxiety is a huge barrier.
C, I think it’s providers’ death anxiety, lack of training, and it being one of those issues that tends to fall through the cracks being nobody’s specific job. There’s a checklist for a lot of nursing home tasks, but not one for “refer to hospice if x, y, z,” as far as I know. I get a lot more psychology referrals now that the MDS is asking residents questions about depressive symptoms and one of the actions to take if they indicate depression is to refer to the psychologist.
Dr. El,
Thank you for passing on this information, I found the ePrognosis.org tools very interesting.
Maybe I’m naive/ignorant/cynical, but I always thought that people were referred to hospice in the last moments of their life was for financial reasons.
When my sister was dying of cancer the insurance wouldn’t pay for her to receive hospice care at home. She was in a hospice facility only eight days before she passed.
Sue, I’m sorry about your sister and that she didn’t get the hospice she wanted. I don’t know about using private insurance for hospice in the community, but in the nursing home, I’ve seen situations where residents couldn’t get hospice at home because their Medicaid application hadn’t gone through yet. They received hospice care while in the facility.
The “conversations” usually begin at our multi disciplinary care plan meetings, often times with family member present (occasionally a more cognitively alert resident)) The decisions seems to incrementally over time start with DNR status then it moves to “do not transfer”/comfort measures. We have an excellent nurse who initiates the “talk”. What I have observed over time is yes, there are clinically medical signs of dying to gauge,but sometimes I am struck by the obvious messages (whether they be verbal or non verbal) that the Resident is sending us directly. They seem to be say “I am shutting down, please allow me to do so.” Within a SNF setting the most basic custodial interventions such as assistive feeding seem to become rote for staff. It’s as if they “train” Residents to endure an extra “quantity” year of life in exchange for quality of life. This very protective, safe environment seems to interfere with the normal, natural process of end of life issues. I suspect, I am not being very objective/scientific about this either. I just sometimes find it disturbing to see a Resident almost forced fed , prodded, poked and propped.
Genie, it’s great that your facility has someone who initiates these type of discussions, which require sensitivity and tact. It’s important for the residents and their families to direct as much as possible how they want to spend their time. Some might want physical therapy and other treatments, and others might want to focus on comfort care. As nursing home staff, we can provide information about their conditions and an emotionally safe place to hold realistic discussions about their options.
I am going through this with a 92-year old man. He has been in the nursing home for two months and is down to 112 pounds. He is 6 feet tall. He is drinking Ensure but it’s not helping. His kidneys are shrinking and he swallows food into his lungs. They want to put him on a different liquid supplement but I don’t think it will do any good. He lost 8 pounds in the last month.
Bobbi, I hope the medical staff is paying close attention to this resident regardless of whether or not they are referring him for hospice care.
Although it doesn’t happen often but enough to make me scratch my head, is when I observe a Resident who is following hospice protocol (whether it be official or unofficial) and they begin to thrive. The weaning of treatment, regulations, meds, weights…etc etc. actually brings a “failure to thrive” Resident back to baseline or beyond…..interesting.
Genie, here’s an excellent New Yorker article about hospice, which notes that people receiving palliative care often live longer than those who don’t receive hospice services: LETTING GO by Atul Gawande
Genie, Our palliative care specialist has tried very hard to promote the idea of palliative care and preparation for hospice very early on before there is an actual need. In general, family and staff seem to be more receptive to the idea when they realize that by signing people up for hospice they are not being the angels of death.
Anecdotally, I have seen several residents who bounced back after they started receiving “comfort care.” I think some of it has to do with a sense of control. When you’re being spoon-fed and “monitored” all the time, it’s difficult to feel like you are the one in control.
C. So True! Having the “conversation” as early as possible prevents and clarifies what could be a prolonged period of emotional wrestling in terms of conflicted feelings and an inability to embrace palliative care. At my place, we are lucky that this is in place. We have not found it necessary to outsource Hospice agencies. In fact, at one time when we did they presented as (forgive me) annoying “middlemen” who quite frankly just got in the way and complicated everything. Our team, really KNOWS our Residents and their families. Granted we are small,so perhaps outsourcing Hospice agencies in a timely fashion for larger Health Care Centers is useful.
And Yes, a sense of control is I think the most powerful variable in this “equation ” of life on so many levels!
Sorry but WHY would you want to keep people in that condition living longer?? Unless your some type of sadist?
My mother refuses to eat, she eats just enough to stay alive. She is 78 years old and only weighs 70 pounds. My 83 year old father refuses to let us take her to the hospital to see what can be done if anything. She sits all day and night in a recliner chair and only gets up to use the bathroom which is a potty beside her chair and to go to the dinner table to only take a few bites of food a day. Most days you have to force her to get up to use the bathroom. She was diagnosed with Dementia and Congestive Heart Failure about 8 years ago but her doctor is an old family doctor and really is no help to us.We don’t know what to do, our Father loves my Mother very much but doesn’t see that she needs medical care. I have tried to tell him we can get someone to come in the home and help with her but he refuses. I have talked to several people but I am told that I personally can not make decisions for her it is up to my Father. Any suggestions?
Dear Debbie, You’re in a difficult situation and it’s good that you’re reaching out for assistance. On the one hand, your father is the primary contact for your mother and he’s probably reluctant to get help because it will lead to changes in their lives. It’s not easy to go against your father’s wishes. On the other hand, your mother is not being properly cared for and is in the kind of situation for which one could call Adult Protective Services — your concerns are legitimate and your mother needs medical attention. Your local office on aging can be a good resource for eldercare services. If you and your family would like to discuss the matter with me privately and in more depth, I do offer eldercare coaching services. For more information on that, please see the Families page. ~Dr. El