One day I was called by an acquaintance to do a favor. She proceeded to tell me that her friend, a prominent Pulmonologist in his hospital, had his mother on hospice care and was having a difficult time with the situation. Although the patient was comfortable (symptom free), with the son (doctor) giving the patient routine doses of morphine and ativan to assure her comfort, the son was not coping well with the situation. The friend had asked him to call the palliative care team when his mother was in the hospital but he didn’t believe in palliative care and thought palliative care would only expedite his mother’s death. Once his mother was on hospice, the friend again, asked him to reach out to the hospice physician for support and guidance but this was met with resistance. Finally, things reached a boiling point and he was open to talking to someone. I agreed to call him at the request of the acquaintance. We briefly discussed his mother’s current situation and it appeared that the patient was actively dying and the son was appropriately giving her the routine medications for comfort. At some point during our conversation he blurted out “I just need someone to tell me I’m doing the right thing!” I told him that in fact his mother was actively dying, he was appropriately giving him the medication and that he was honoring his mother’s wish of dying comfortably at home with her family around her. We also discussed possible time frame for her passing. The conversation was about 15 minutes long and held while I was a passenger in a car. I later learned that the patient passed comfortably within 24 hours and after our conversation the son was at peace with the situation and felt relieved that a “Palliative Care Doc” let him know that he was appropriately caring for his mother. He stated that if a 15 minute conversation on the phone could make him feel as calm and comforted, what positive effect would have taken place with him, his family and mother if he would have allowed the palliative care team to be involved sooner. After this experience he vowed that he would be a champion of palliative care and make palliative care more accessible to his patients, recommend palliative care involvement to his colleagues and call the palliative care team sooner in the course of a patients hospitalization.
This is a phrase I’ve coined to help patients talk to their oncologist. As I’ve eluded to in my blog and as another blogger noticed, oncologists continue to treat patients with chemotherapy even if the patient is not a candidate for further treatment. One of the reasons is that they don’t want to take HOPE away from the patient and they are afraid that the patient’s psyche is to fragile to handle the truth. To make matters worse many patients approach chemotherapy as “Please doctor can I have chemo” rather than, “I would like to be treated if in your professional opinion the treatment will increase my time with minimal side effects and risks.” Most doctors will continue to treat, even if contraindicated, if you approach them with the first way of asking the question. I’ve also seen patients that initially wanted treatment (and they said “please treat me”) become angry later after they find out that the treatment wasn’t necessary or produced a poor outcome. I had an experience with a patient that had metastatic colon cancer at age 48, who wanted to live because she had an 8 year old daughter. The oncologist began treating, but this certain oncologist never tells his patients whether the chemotherapy is curative or palliative, and he didn’t tell her that the chemo was palliative only and that her time was limited. The patient had many opportunities to discuss how bad her cancer was but she chose to ignore this and felt that the oncologist would tell her if her cancer was severe. The oncologist never discussed it and it fell on my lap to tell the patient that her chemo was palliative not curative. After our discussion the husband was left to pick up the pieces as the patient didn’t like what I had to say. To make a long story short (2-3 months later), the husband and patient became very, very, very angry with the oncologist because he didn’t fully discuss the patients cancer and prognosis and he prescribed chemo that was perceived not to provide a benefit. Why do I mention all this…because MOST oncologists will treat any patient as long as the patient is actively seeking treatment. They will even start what we in the field call “chemo-lite.” Which is a chemo agent that will cause the least side effects but make no difference to the cancer except to allow the patient to feel that they are being treated. So how do you let the doctor off the hook? You say something to the effect of, “Doc, in light of my cancer I only want to discuss treatment options that will potentially benefit me, but I’m ok not receiving any treatment if you do not expect treatment to be beneficial for me.” By approaching treatment this way, you give the doctor some breathing room and a chance to say, “you know chemo may not be beneficial for you with this type or stage of cancer.” If you approach the doctor with resting all your HOPE on chemo/treatment, then guess what, there will always be chemo available to you. However, if you initiate conversations about and put more importance on quality of life, dignity and spending time with family and friends with your remaining time, you are less likely to get unnecessary treatments and more likely to have a better death. In fact when some patients opt for further unecessary treatment, they can potentially shorten their life. This seems conterintuative since the whole reason they are receiving chemo is to lengthen their life. Please email me for further advice about how to discuss sensitive issues with your doctors.
It’s amazing to me how many physicians don’t realize that their patients are dying. Sometimes I’m in awe and I’m thinking “are you serious?!” Last week we were consulted on a patient because she was 90 with widespread metastatic disease from an unknown primary cancer. The daughter seemed to be on board with getting her home on hospice since the patient repeatedly stated “I want to go home” and she was clearly declining with a poor functional status. The patients son wasn’t on board with stopping all treatments and was encouraged by the primary care physician who stated “If it was my mom, I would continue to treat her and see how things go.” Now this may seem like good advice, but if you all could have seen this poor patient, your heart would have gone out to her and you would have known how I felt. We talked to the daughter during a Goals of Care conversation, since the patients confusion had worsened and she was unable to make decisions for herself, and she stated she had a gut feeling that her mother didn’t have a long time and further chemo was not going to be beneficial. The oncologist told the daughter that further chemo could help the patient improve and live another 6-12 months. The daughter just stated over and over that more treatment didn’t seem to make sense to her. What made it difficult for the daughter was that the primary care doctor recommended more treatment, the oncologist recommended more treatment and her brother was optimistic about more treatment. I was sad inside and was screaming in my head “hurry, please take her home and keep her comfortable before she suffers more in our medical system!” The daughter kept the treatment going based on all the input, despite her gut feeling, and 2 days later the patient began to develop terminal delirium/agitation. She was quiet and peaceful when she was not being touched but as soon as she was touched or spoken to, she began to scream out. This was interpreted by the oncologist as strict pain and he changed the pain regimen I had recommended (the regimen keeping the patient comfortable to this point). There was also an order for further chemo if ok with the daughter!?! I saw the patient that morning and recognized her terminal delirium and noted this in the patients chart and stated that the patient was beginning to actively die. I also called the daughter and informed her. Luckily the daughter opted to refuse the chemo and 24 hours later the patient was made comfort care in the hospital and died 48 hours later. Of course, this isn’t the only time I’ve seen a patient dying and still receiving treatment, but every time it happens I’m still in disbelief. Oncology nurses have shared with me their internal conflict of hanging bags of chemo or sending patients to radiation when they are dying. It’s as if nurses, social workers, chaplains and all other ancillary staff (even the janitor…ok a little sarcasm) can tell when a patient is dying except for physicians. Is it our ultimate fear of failure? Is our minimal time at the bedside? Is part of this financial? Or is it a lack of education and exposure to dying patients. What do you think?
I was impressed by a sister’s love this week. Early this week the palliative care team got a consult for a 45 y/o male with a history of lung cancer who told his family that no matter what, he wanted to be comfortable and die at home when the time came. As he began to decline, and treatment options were exhausted, his oncologist referred him to a hospice (that should be closed down) as they had discussed this on several occasions. As his pain worsened and his mental faculties declined they put an IV in his arm and taught the sister to push IV hydromorphone. As his pain worsened they kept telling her to give it more often to the point that she was staying up all day and night pushing IV hydromorphone and Roxanol under the tongue every hour. As she described this I could see the pain in her eyes. I had to fight back the tears in my eyes as I thought about the amazing love she was showing toward her brother. I asked how she was able to sleep and still give the medication so often. She stated she would sleep in bed with him waking up every hour to give Roxanol or Roxanol and IV hydromorphone. The sister did this to honor his wish of dying at home and comfortably. I usually don’t apologize for things that are out of my control but I apologized for hospice in general as I told her that this is not how care on hospice should go. The situation worsened when, on the morning of admission to the hospital, the patient woke up in an angered rage. He was yelling about how he wasn’t comfortable, how he was short of breath and he even BIT his sister. They finally called 911 and the ambulance brought him to our hospital. Luckily the admitting doctor knows and believes in palliative care and called me directly to help this unfortunate patient. The patient was started on a continuos infusion of hydromorphone and I started the patient on Lorazepam. When I saw him the first day he was sedated and calm from whatever meds he got in the ED. After hearing the heartbreaking story from the sister I promised her I would make sure he passed peacefully and comfortably. I was thinking to myself “I have to make him comfortable for him and his family.” Unfortunately the meds wore off that night and he became agitated again! The dose of Lorazepam didn’t calm him even after increasing the dose. I knew this was most likely terminal agitation/delirium and the only way to make him more comfortable was to use a stronger medication. I gave him a loading dose of phenobarb and started an every 6 hour routine dose. He was finally peaceful and comfortable on this regimen and he passed away 4 days later without any distress. The family felt relief and appreciation for what our team was able to do for the patient and for them. I tried to reassure that sister that even though he wanted to die at home, sometimes certain circumstances prevent things going exactly as we planned. She was so relieved that he was no longer suffering that she no longer felt bad about him not dying at home. As I gave her my condolences and walked away my eyes welled up with tears. This sister touched me from the first day I met her because I just saw the pain in her eyes, voice, physical being and she looked defeated. I started this blog to write this story and decided to write in a blog about other stories that touch my life. Anyway, thanks for reading.
I am a fellowship trained and board certified hospice and palliative medicine physician. I practice both hospice and palliative care and I love teaching nursing and medical students as well as residents. I am a medical director of a hospice and see about 30-40 patients a month in their homes, skilled nursing facilities and extended care facilities for the elderly. I’m also a medical director of a palliative care program in a hospital and my team does about 30-40 inpatient consults. I started this blog to share some of my patient experiences, vent my emotional stress and share some insight from a hospice and palliative care point of view. Some blog entries will be emotionally uplifting, some will be more factual and some will even be mildly cynical. Hopefully this blog will help others in coping with this difficult, challenging but yet very rewarding field. Please make any recommendations, thanks for reading.