There is nothing we can do

The writing captures a common experience when a serious illness cannot be cured and provides insight into communication around serious illness. It offers wording a nurse can use that elicits a positive message.

There is nothing we can do

When I entered the nurse's station, I immediately felt the typical business of a weekday morning. The morning rush during which everybody tries to get a handle on all the tasks for day was unfolding. One of the nurses looked at me briefly and said, "Good that you are here - Something needs to happen - This patient has cancer from head to toe and the family is in denial. The patient is not a full code but there is nothing we can do." Sounds familiar?

Working as a palliative care nurse in a hospital is like no other nursing job. My job is to look at the patient and their family in a holistic way, to look at the bigger picture and to address nursing needs or general care needs that are related to serious illness and frequently at the end of life. Nowadays, many of our patients in the hospital have specific needs related to serious illness and require a different skill set.

I carry around a small bag with papers and informational material - my stethoscope is neatly tugged in there as well - it lives in a zip lock bag ready for use together with all the information brochures and papers. My work outfit does not include scrubs, I am mostly a conversation nurse, although there are times I do "hands on" nursing care.

The patient I was asked to see to assess for palliative care needs appeared very sick when I entered the room. Only half awake, the face sunken in, breathing shallow and faster than normal, the skin glowing in this yellow-greyish undertone that tells you right away something is wrong. A variety of drains and intravenous lines around him. His wife who sits next to him in the recliner chair is hesitant when I introduce myself. She agrees to talk with me and points out that her husband has been confused the last days and tried to pull out IV lines and the Foley catheter, which is the reason she stayed overnight.

My biggest and most important tool is listening - I have the luxury to provide "time" while patients and their families tell me their "story." His wife tells me a typical story and tries to sum up neatly. The last several years that have been consumed by the initial cancer diagnosis with all the usual tests, surgery, radiation, chemotherapy. Uncounted visits to the city teaching hospital close by that is known for expertise in cancer treatments. Many days sitting in the hospital and waiting for lab results to show up, waiting to hear from the oncologist, waiting to know what comes next. Months on end with frantic activity in which being a cancer patient's wife turned into an unpaid full-time 24/7 caregiver job. True - there were also some months during the last years when things seemed better but life never returned back to where it was before he was found to have cancer in an advanced stage. Instead of traveling for fun, visiting family, and getting together with their group of friends to play cards, they were now experts in navigating the large hospital in the city, knew all the different times during which traffic is unbearable, developed preferences for one of the food courts and got to know the oncologist, nurses, aides, lab technicians, and the cashier at the food court.

His wife continues to paint the picture that reflects their journey for the last years. The change of identify from the "retired couple with grandchildren" to a member of the "cancer tribe" with specific rituals and unwritten rules. The many talks she had with other spouses in a room united in hope but also united in the unspoken fear and worries.

"We did everything they told us to do. Never missed an appointment, faithfully showed up for lab work, scans, check-ups."

The last two months, she noticed that things were changing. Granted, they had been going to the cancer center for years and were now very familiar with what it means when the doctor tells you "I have bad news - we found something on the scan that does not look good" or "I am afraid that the chemotherapy is not working." It never meant to her that things might now be going into a different direction overall. To her, it meant that there will be "something they can do", although she realized that the cancer was slowly taking over his body.

"He is definitely much weaker now, he has not gotten out of bed in weeks, it was already very difficult at home the last weeks. I have to do everything for him, he sleeps a lot." Her face gets sad and for a second I can feel the desperation when she continues to outline what has bothered her the most for the last weeks: "You know, you are good enough as long as they can treat you, while they are doing surgery, giving you chemo and radiation. But when there is nothing left and the cancer spreads they just throw you away. One day I called to talk to the new oncologist to tell that there were problems and that we had gone to the local emergency department because the city is too far for him now that he is so sick. I was told to talk to hospice. Just like that."

We talked some more and she made it clear that she appreciated everything they were able to do for her husband. But it bothered her that there was no transitioning period, that the oncologist she had trusted and who was empathic had left the teaching hospital - she never connected with the next one. And she felt "passed off", "thrown away" and obviously abandoned. They never had a sit down about what would be important in case the illness progresses and spread further or what could lie ahead. "Of course they talked about do not resuscitate but you just don't know what comes next or what to do."

It did not help when it was suggested to her to talk with hospice. "They want me let him die." It also started a whole chain of other reactions and events all based on the sudden feeling of abandonment by the department and institution that had been their second home for the last years.

Obviously, there were many missed opportunities for conversations. When he became unable to tolerate food and TPN was started it was helpful but it was a milestone and would have been a good time to sit down. When they found metastasis after the extensive surgery that left him with a variety of bags and attachments it would have been a good time to talk about "what if" and "how much are you willing to go through for gaining more time."

The patient's wife felt not prepared for what her husband had been knowing for a while. His continued functional decline and the continued unwell feelings including pain, nausea, vomiting and general discomfort were clear signs for him that he was not doing well and he became tired of being sick and unwell. For his spouse, his decline meant mostly more activity and more "things to do" but did not connect her with the fact that he was approaching the end of his life. When she realized, it was like the moving universe suddenly came to a full stop. Caring for him and taking care of all medical appointments, managing his illness and drains had moved her along like a conveyor belt where "you just keep going."

She pointed out that she was not in denial, she knew that death would come but it did not have much meaning until the physician said "hospice". The constant activity shifted all her focus and thinking towards "doing" with no reflection about the bigger picture. When she was not busy with his 24/7 care and coordinating providers and treatments, she was so tired that she would just sleep or distract herself watching TV. Now that her main caregiver activity was to sit with him and talking to his care team, her emotions and thinking were catching up. From non-stop activity to full-stop. Her mind and heart re-connecting what had been mostly an intellect based experience for her.

I validated her feelings and expressed sadness. As human beings, we want to feel connected and we want to know that the other person cares. People want to tell their story; they need to talk about how they feel and do not want to feel "thrown away." Many transitions do not go well because conversations happen too late and do not include "what if" talks.

I sometimes hear "come on - they must have realized he is dying" - but reality is that our society does not view dying as a normal part of living and physicians view their job mostly as "treating" and have a lot of discomfort when they need to talk about the fact that dying is not optional - which is why many tend to have conversations that are not effective or hurtful. "Your cancer is progressing despite the 3.line treatment - There is nothing else I have for you". And when the patient and family starts to show distress followed by "do not lose hope - there is always something new, it may be just around the corner and I will look into clinical trials" while knowing very well that all of this is not an option and this is the time to prepare and do ensure that the time that is left can be spend in the most meaningful way. Sounds familiar?

Physicians often feel that they are taking away hope - but what does that really mean? Often enough, the helplessness and the lack of skills to have a conversation that does not "turn bad" leads to passing the bucket to a different provider or the hope that "the family will realize." Some providers have become skilled in avoiding a conversation and elevate the "having a purposefully vague conversation" to an art so they fool themselves and others that "I have put it out - they are not ready to hear what I am saying."

Obviously, I am advocating for earlier and better conversations. It is not about "taking away hope" or "stop fighting." When somebody has a serious illness that very well may turn terminal, it is important that the physician sits down and has a conversation that focuses on goals, values, preferences, trade-offs, strengths. It is important to stop the conveyor belt of "treatment" and to pause early on to reflect, build the relationship in a different way and guide patients and their families along. Thinking needs to shift from considering all treatments possible to pause and evaluate the benefits and if the treatments and care plans are actually congruent with the patient's overall wishes and goals if "time left" is limited regardless of maximizing treatment.

When death is not avoidable in the near future, we should focus on finding out how much the person is willing to go through and what are acceptable trade-offs for gaining more time. Those structured conversations do not have to be long, when done early on and regularly they might be only 20 minutes long. It helps the family to understand what their loved one wants and opens the room to discuss what is important at a given time and which treatments and care plan match that goal. Instead of focusing on "what we cannot do" focusing on "what we can do" as a healthcare team.

There is actually a lot we can do when somebody approaches end of life: We can help you to find out which care plan and treatments match your needs and preferences. We can help you to maximize your comfort and allow you to spend the time that you have, however long that may be, with more quality especially when comfort and avoiding suffering is most important to you. We can still hope and fight - not for a cure or to maximize the lifespan - but for the most comfort and quality to make the time that is left most meaningful. We can give the gift of time and listen. We can care and sit with patients and their families throughout this time. We can re-assure them of their choices especially when they feel ambivalent about comfort care. There is actually a lot we can do!

There is nothing we can do-article.pdf

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nutella

About nutella, MSN, RN

Nutella is a certified hospice and palliative care nurse and works in a hospital for the palliative care team.

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Specializes in Peds, Med-Surg, Disaster Nsg, Parish Nsg.

Thank you for being there for this patient and his family at a time when they felt so lost, vulnerable and "thrown away" by their physician. Many times it is the nurse who is there to pick up the pieces in the wake of an avoided communication that should come with the delivery of bad news. It is so hard for some physicians to move from the curative role to that of providing comfort care....to focus on what the patient and their family really need in those final days.

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Specializes in Case mgmt., rehab, (CRRN), LTC & psych.

Warning...this is longer than what I usually post.

Thank you for this timely piece. I very recently experienced a similar occurrence in my own family, albeit with a few differences. My mother was upper middle-aged (late 50s) and experienced a sudden phase of acute illness that landed her in the hospital in mid December. She died earlier this month, approximately three weeks later.

To complicate matters, I reside out of state. When I was not in town, I received frequent phone updates from my father that were sometimes not clear. He is a typical lay person who believes death is the worst possible outcome, even if intractable suffering and nonexistent quality of life are the alternatives.

And my mother did suffer during her final three weeks of life with daily wound debridements down to the fascia, dialysis, and pain medications that were beginning to no longer work because of tolerance. I had hope when her condition was downgraded to 'stable' and she was moved from the ICU to a general med/surg floor, but a week later a rapid response resulted in a move back to the ICU.

One of her ICU nurses, who had developed a rapport with my father and me, scheduled a palliative care consult while I would be in town. The nurse knew I would be the key to convincing my father of alternate options regarding my mother's care. My parents had been in a relationship since their teens (40+ years) so my father was angry when the MICU physician, then the chief surgeon, were honest and said my mother's mortality rate was high.

My father said, "Why didn't they give me some hope?"

I replied, "They aren't doing any favors by candy-coating the reality of the situation."

Although the palliative care nurse was nice, I got the vibration that this was business as usual for her. Since she has probably heard and seen a myriad of sad stories in her specialty, I imagine this may have been another routine consult. In the end, I convinced my father to select an inpatient hospice house.

Again, thanks for this timely piece. Ending the futile interventions and watching my mother die had been one of the more emotionally challenging experiences for me. However, my mother was in terrible pain, suffering on a daily basis, and subjected to daily debridements in the operating room. She would never walk again. The wounds would never heal. She was requiring daily dialysis, tube feedings, intubation, and twice-daily wound care. She had a new ileostomy to prevent stool from coming into contact with the wounds. Now the pulmonologist was suggesting a tracheostomy. Something had to give.

Her quality of life had plummeted to zero, never to return again, unless you consider staring at the ceiling a good life.

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Specializes in Peds, Med-Surg, Disaster Nsg, Parish Nsg.

Commuter I am so sorry your mother had to go through this. It is so hard for family to let go. It's difficult enough to have your mom to experience this, but then for you to have to deal with your own anguish and anticipatory grief as well as your father's inability to grasp reality...that is so overwhelming. As a nurse you came to the realization sooner.......not easier. But it was extremely hard for you to watch your mother suffer. You are in my thoughts and prayers.

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Specializes in Nephrology, Cardiology, ER, ICU.

@Nutella - thanks so much for this. As an APN in nephrology, I deal with palliative care daily. All my pts qualify for a palliative care consult even my teenage ones as they all have life-limiting illness. You sound like such a compassionate nurse - I agree with so much of what you say. Because I care for chronically ill pts who have in one way or another somewhat adjusted to being "ill", I am frequently the one to orchestrate "the family meeting" - in fact I have two this week alone. I enjoy my work for the most part but am very pragmatic that my pts won't live an uneventful life. My wish for my pts is that they live each day as best as they can - in the end that's what we all have to do.

@Commuter - I'm so very sorry for your very recent loss. You helped your Father come to the right decision - death isn't always the worth event in one's life. I hope that your positive memories of your Mother sustain you through the grieving process.

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Specializes in Case mgmt., rehab, (CRRN), LTC & psych.
Commuter I am so sorry your mother had to go through this.

@Commuter - I'm so very sorry for your very recent loss. You helped your Father come to the right decision - death isn't always the worth event in one's life. I hope that your positive memories of your Mother sustain you through the grieving process.

Thank you, both. Oddly enough, the last week of my mother's life incited the most profound degree of sadness from me. The heartbroken feelings are difficult to put into words when you hold a loved one's hand, knowing that the person will not be alive in the near future.

I now accept that my mother has met her demise and feel a sense of relief that her suffering has ended. All she wanted to do was go home and return to her daily routine with my father. Unexpected illness changed everything for my parents.

Human life is finite. A good palliative care nurse can help families realize the limits of what health care can accomplish while sensitively presenting other options. Also, bedside nurses who are good communicators can help families come to the realization. I will forever be grateful to the ICU nurse who arranged the palliative care consult for my mother's case.

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One of the nurses looked at me briefly and said, Good that you are here – Something needs to happen – This patient has cancer from head to toe and the family is in denial. The patient is not a full code but there is nothing we can do.” Sounds familiar?

Did you mean the patient IS a full code? Because that is what I struggle with at end-of-life. Being "not a full code" would be a good thing.

I went through this with my own dad who had emergency surgery for late-diagnosed colon cancer and a myriad of co-morbidities. He had a heart attack at the end of surgery, was coded for 10 minutes, brought back but was brain-dead.

My brother was his legal rep and wouldn't make him a DNR. After a few days and lots of conversation with the physicians, he finally agreed to give the legal right to me to make the decision. He said even though he knew it was the right thing to do, if he made the decision, he would feel responsible for his death. My brother has never had any negative communication with me regarding my decision, which is good.

My mom had Alzheimers Dementia and lived in a Dementia Center for about 5 years and was a DNR. Fortunately.

I have a family member who is in her 80's and was recently diagnosed with idiopathic pulmonary fibrosis. She and I spoke yesterday and she was not happy with her physician who flatly told her she had "3 to 4 years left to live". She wants a 2nd opinion.

As a hospice nurse, I've encountered people who don't want to know the truth right away. They want to keep hoping. Then you have people who want to know exactly when death will occur.

It is a hard path to walk for medical professionals.

Commuter - I'm very sorry about your mom.

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Specializes in OB.

(((((Commuter))))) I know from your past (always eloquent) posts that you have a complicated relationship with your parents. Nonetheless, it sounds like you have stuck by them and supported them through a lot. My condolences in this time of grief for you.

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Warning...this is longer than what I usually post.

Thank you for this timely piece. I very recently experienced a similar occurrence in my own family, albeit with a few differences. My mother was upper middle-aged (late 50s) and experienced a sudden phase of acute illness that landed her in the hospital in mid December. She died earlier this month, approximately three weeks later.

To complicate matters, I reside out of state. When I was not in town, I received frequent phone updates from my father that were sometimes not clear. He is a typical lay person who believes death is the worst possible outcome, even if intractable suffering and nonexistent quality of life are the alternatives.

And my mother did suffer during her final three weeks of life with daily wound debridements down to the fascia, dialysis, and pain medications that were beginning to no longer work because of tolerance. I had hope when her condition was downgraded to 'stable' and she was moved from the ICU to a general med/surg floor, but a week later a rapid response resulted in a move back to the ICU.

One of her ICU nurses, who had developed a rapport with my father and me, scheduled a palliative care consult while I would be in town. The nurse knew I would be the key to convincing my father of alternate options regarding my mother's care. My parents had been in a relationship since their teens (40+ years) so my father was angry when the MICU physician, then the chief surgeon, were honest and said my mother's mortality rate was high.

My father said, "Why didn't they give me some hope?"

I replied, "They aren't doing any favors by candy-coating the reality of the situation."

Although the palliative care nurse was nice, I got the vibration that this was business as usual for her. Since she has probably heard and seen a myriad of sad stories in her specialty, I imagine this may have been another routine consult. In the end, I convinced my father to select an inpatient hospice house.

Again, thanks for this timely piece. Ending the futile interventions and watching my mother die had been one of the more emotionally challenging experiences for me. However, my mother was in terrible pain, suffering on a daily basis, and subjected to daily debridements in the operating room. She would never walk again. The wounds would never heal. She was requiring daily dialysis, tube feedings, intubation, and twice-daily wound care. She had a new ileostomy to prevent stool from coming into contact with the wounds. Now the pulmonologist was suggesting a tracheostomy. Something had to give.

Her quality of life had plummeted to zero, never to return again, unless you consider staring at the ceiling a good life.

I am sorry that you (and your mom / father) had to go through this! It is very sad when anybody gets subjected to a variety of treatments that cause much suffering without much benefit and result in a questionable quality of life. All the technology we have nowadays does not prevent our bodies and minds from being human. I am glad that you were there to convince your dad that all the interventions would not result an a meaningful life.

And you also validate what I have been saying for a while - the relationship between the patient and the care team is essential. Nobody wants to be "a number", and "caring" is so important. I hear this that all the time - people want to connect with their healthcare team.

It must have been hard for you to be in this position.

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Specializes in Oncology.

This is an excellent post. I can't like it enough. Having worked 10 years in oncology at a major research/teaching center I've seen so many doctors that have learned to dodge the death talk it makes me want to pull my hair out. I'm routinely told, "I gave them all the information they need, it's their job to make a decision." Next thing I know they're getting a new Hail Mary chemo that has a completely different indication but there is one anecdotal case of it helping in a situation like this. My hospital's Google page is all 1 or 5 star reviews from either families saying we dumped them when they were dying or saved them when everyone else said there was nothing to be done.

I have personally told family members that their loved one was dying. They've told me they appreciate the honesty and taken them home. Then I've dealt with guilt wondering if they would have been one of our miracles.

I've vowed to always love my family members enough to let them go. Now my father is fast approaching multisystem organ failure. And I've got the doctors bring in new specialists daily telling me about the new treatment plans we can maybe try soon if such and such improves well enough to tolerate it. And here I am wondering if I'm the evil family member doing a great disservice now not giving him permission to let go.

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Specializes in LTC, assisted living, med-surg, psych.

Commuter, I am so sorry for your loss. Many (((((hugs))))) for you.

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@Nutella - thanks so much for this. As an APN in nephrology, I deal with palliative care daily. All my pts qualify for a palliative care consult even my teenage ones as they all have life-limiting illness. You sound like such a compassionate nurse - I agree with so much of what you say. Because I care for chronically ill pts who have in one way or another somewhat adjusted to being "ill", I am frequently the one to orchestrate "the family meeting" - in fact I have two this week alone. I enjoy my work for the most part but am very pragmatic that my pts won't live an uneventful life. My wish for my pts is that they live each day as best as they can - in the end that's what we all have to do.

@Commuter - I'm so very sorry for your very recent loss. You helped your Father come to the right decision - death isn't always the worth event in one's life. I hope that your positive memories of your Mother sustain you through the grieving process.

@Nutella - thanks so much for this. As an APN in nephrology, I deal with palliative care daily. All my pts qualify for a palliative care consult even my teenage ones as they all have life-limiting illness. You sound like such a compassionate nurse - I agree with so much of what you say. Because I care for chronically ill pts who have in one way or another somewhat adjusted to being "ill", I am frequently the one to orchestrate "the family meeting" - in fact I have two this week alone. I enjoy my work for the most part but am very pragmatic that my pts won't live an uneventful life. My wish for my pts is that they live each day as best as they can - in the end that's what we all have to do.

@Commuter - I'm so very sorry for your very recent loss. You helped your Father come to the right decision - death isn't always the worth event in one's life. I hope that your positive memories of your Mother sustain you through the grieving process.

TraumaRUs - we work also somewhat closely with nephrology when there is a patient who is offered dialysis but does not wish to start, if a patient considers stopping, or if a patient was on dialysis but now can not continue for whatever reason.

I worked in acute dialysis for a while and enjoyed that very much - the on call hours and the something weird situations when you work for a "vendor" not so much.

I am glad you are referring to palliative care - in my area, a lot of nephrologists have discussions without palliative care and are very capable. But there are situations when they refer and work together.

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