A short while ago, I received this email from Rosemarie De Angelis: “I recently lost my life partner of 31 years. He was being treated for cancer and I was STUNNED by the lack of contact from ANYONE [on his treatment team] after his death. I think it would make a great article…what those remaining need and what is the responsibility of the providers to REACH OUT.

I agreed that is was a worthwhile topic to explore. There are probably lots of reasons why a health care provider might not reach out to family members to offer condolences when a patient dies, but none of the reasons Rosemarie got was the least bit satisfactory. Quite the opposite. Here’s what happened.

Rosemarie and Joe

Rosemarie’s life partner was named Joe Brann. He was 67 when he died. Rosemarie was devastated and she is still trying to make sense of a world without him. She and Joe first met in 1988 and even though their romantic relationship changed, they remained each other’s best friend.

For 31 years, we were totally enmeshed in each other’s lives regardless of what else was going on. He was my soulmate, the person who knew me better than anybody in the world. And I was the person he came to with anything that he needed or any crisis or celebration he had. The same was true in reverse.

Rosemarie De Angelis

Joe was with Rosemarie every step of the way when was diagnosed with breast cancer in 1992. She was there for him when he started having health issues in 2019 and a few months later, was diagnosed with mesothelioma, a type of cancer that affects the lungs after asbestos exposure.

From that time on, we were in and out constantly with his oncologist and palliative care team. He was also having chemo, which was brutal. Then he began immunotherapy, but after one treatment, he was getting weaker and weaker. What we didn’t realize at the time is that the tumor was growing.

Rosemarie

Because he was getting weaker, before Joe could get his second immunotherapy treatment, his doctor changed his pain medications. But his condition didn’t change.

I was frantic and called the palliative care nurse daily. Finally, I called and said that I needed to bring him in. He was diagnosed with pneumonia and told that it was treatable. He was on antibiotics for the next three days and then I was told there was nothing more to be done.

I laid next to him in bed and told him how sick he was. It was the hardest thing I have ever done. I told him I would do whatever he wanted. He said, ‘I want to stay home with you’ and I said then that’s what we’re going to do.

That was 48 hours before he died. Hospice came in on the last day and they were starting to set up his medications and get me ready to administer the medications. I thought, okay, I can do this I can, I can do whatever he needs, I can do it. I understood that he was going to die, but I didn’t think he was going to die in 48 hours. He died with me sitting there with him and his brother. I was holding his hand and the last thing I said was I love you so much.

Rosemarie

Hospice notified the oncology doctor’s office and the palliative care team that Joe had died.

Three weeks passed and she hadn’t heard anything, so Rosemarie decided to write letters to the providers who had been most intimately involved in Joe’s care.

I was wild. I was just saying, okay, so it’s been three weeks since Joe died and we haven’t heard anything from anybody, like nobody’s picked up the phone call, nobody’s written a card, nobody’s done anything. And I said Is this because he’s no longer a billable patient? Do you have any idea how painful this is and how important it is to reach out to people? We were there the last four days before he died. We were there every single day in your facility getting treatment.

Rosemarie

Rosemarie didn’t get any replies, so she wrote a second round of letters. She got a card from the oncologist. She said the message was basically “I missed this one. Sorry.” His response only made Rosemarie feel angrier than she already was.

More time passed and she still hadn’t heard from the doctor and nurse on the palliative care team, so she wrote and hand-delivered a third letter. She says she experienced a PTSD reaction as she approached the office and hasn’t been able to travel on that stretch of road since.

Still nothing. She wrote again.

Finally, 15 weeks after Joe’s death, she heard from the palliative care nurse. Rosemarie told me that she felt angry when she answered the phone but then the nurse asked why it was she wanted a call.

And then I was raging. I said, you know what I want? First I want to know why did it take 15 weeks for you to call? She didn’t answer the question. She said something to me like I’m concerned about you, who’s taking care of you? I said you have the nerve to ask me how I am after 15 weeks, I said it’s so insincere.

Rosemarie

The conversation continued to go downhill and Rosemarie says she hung up. At this point, you might be thinking that Rosemarie was pretty combative. but anger is a natural part of grief. According to The Hospice Foundation of America: “Many people do in fact feel angry when someone we love dies. Angry at being abandoned, angry at the extent of the pain, angry that our life is changed, angry that managing grief feels difficult, and angry that the world suddenly feels different—empty, unsafe, or lonely.

Rosemarie was (and still is) grieving deeply. If you look beyond or perhaps into the center of her anger, you might realize that in addition to her pain, she was also trying to relay an important message to Joe’s treatment team. She simply wanted acknowledgment from them that Joe’s life mattered and that so did she.

I can’t help but think about how when one of our cats died a few years ago, we received a sympathy card from the veterinary clinic that was signed by the entire staff. For our cat! We still talk about that show of compassion. When my dad died, we got a beautiful hand-written note from his primary care doctor. I kept it. Having worked in the field of radiation therapy treating people with cancer for ten years, I know how intimate the relationship can become when you are treating someone every day for weeks or more. I also know that even if you scan the obituaries every day, you may miss the death of a patient who was no longer being treated. However, in my opinion, when a person is still under treatment and passes away, it’s a different story. But I digress.

The week after the nurse called, Rosemarie heard from the palliative care doctor who told her he was embarrassed to say he always sends a card and had one for Joe, but it was still in his briefcase. Rosemarie was incredulous.

You know, we used to feel good when we went to see [this doctor]. I felt like he listened and Joe liked him and that was what really mattered to me. But what is the responsibility if somebody doesn’t make it? There are other people in that person’s life and what do you do about responding? Is it just that our protocol is that we send a card and sometimes we forget or it lands in the bottom of our briefcase or is it that we call the patient’s family or loved ones. What is it?

Rosemarie

For anyone who is not familiar with palliative care, it is a team-based medical specialty that focuses on improving quality of life for people living with a serious illness and their families. It includes paying very close attention to the needs and concerns of the family caregivers because seriously ill people are critically reliant on their families. It involves expert communication skills.

Rosemarie was Joe’s life partner and she was his caregiver.

We had come full circle and were living together again, at the home Joe found 25 years ago, designed and renovated. I am so grateful that he died in a place he loved and where he was loved. And I am so incredibly grateful to have been his partner and the one who cared for him until his death.

Rosemarie

The palliative care team plays a critical role for caregivers and loved ones because other medical providers are often so focused on finding the right treatment, on curing/saving patients that they can’t or don’t pay attention to their overall quality of life. If you’d like to learn more, listen to my podcast with Dr. Diane Meier. She’s a palliative care specialist and the Director of the Center to Advance Palliative Care at the Mount Sinai School of Medicine.

I contacted Dr. Meier to see if she would comment on Rosemarie’s situation and why some health care providers don’t reach out when a patient dies. She answered that it would be difficult without hearing from everyone, but she offered some possibilities.

From a hypothetical (not actual) perspective, there are a zillion possible reasons for this series of events including a team overwhelmed by unremitting demand for services for patients in extremis right now; understaffing (a universal problem) especially for social workers and chaplains; an unusually vulnerable patient; etc etc. single point of view is insufficient to get the big picture.

Diane Meier, MD

I also spoke with Patti Sands, a licensed clinical social worker who is an oncology counselor and Psychosocial Services Coordinator at the Dempsey Center here in Maine. When I asked her about protocols for when a patient dies, she described what they do at the Dempsey Center.

Unfortunately, we deal with this quite a bit. Because this is such a special place, we have a protocol where we generate a card that’s hand signed by all the staff here when a death happens. And then we have services for people. We offer individual grief counseling and we have a grief after a cancer loss group and I believe Hospice of Southern Maine is the same way. They have a protocol established for reaching out to folks after a loss. I don’t know of any protocols with doctors.

Patti Sands, LCSW, The Dempsey Center

She may not know of any protocols with doctors, but like Dr. Meier, Patti offered a few general insights into why she thinks some don’t reach out when a patient dies.

First of all, the nature of doctors’ training is to save people. I can’t imagine it’s a comfortable feeling when they can’t, so I think there’s an automatic barrier that comes up psychologically. Even though I want to think that the humanity of it would override that, I don’t think it necessarily does.

Then I think another thing that could be going on is the relatively new subject of compassion fatigue, which I think happens to people first and foremost in the healthcare professions. It breaks down into a couple of areas. One is burnout, people just can’t do their work anymore. There’s also something called secondary traumatic stress where the person doing the service takes on PTSD themselves. So I think that a form of compassion fatigue is a second category of what might be happening for some doctors and health professionals.

The third is productivity expectations that are being put on people for a variety of reasons. I really believe there’s not a built-in allowance. You’re lucky if you get to go to the bathroom or you get to go home to your family and see them for an hour. And then the notion of reaching out to a patient who’s lost someone, even though again, on a humanistic point of view it seems very important, probably drops down the scale.

Patti

Because she is a bereavement counselor, I also asked Patti what she thinks matters most to people who are grieving. She said there was no one answer. That everyone is different.

Some people seem to have a very good support system within their own friends and family and just need to be heard and listened to and allowed to have their process whatever it is. Some people feel that friends, family, and co-workers get ‘sick of hearing about it’ and that’s when a grief group or a grief counselor can help. Oftentimes, folks just want to hear that what they’re going through is normal and that there’s no one timeframe that applies to everybody. And then there’s a really small percentage, like 3% of the population, who actually have a diagnosis called complicated grief. That’s when someone just can’t get out of bed, can’t get over or accept that it happened

Patti

Rosemarie has friends and family and she is also seeing a bereavement counselor through Hospice of Southern Maine. She realizes that she is resilient and will get through this, but right now her grief over Joe’s death is still strong and ever-present. She hopes that by sharing her experience and her feelings, she might be able to make a difference somehow. That it will help someone else who is grieving or inspire a caregiver to not just think about it but to write that note or better yet, make that call when a patient dies.

Yes, that’s what I want. I want it to make a difference. I don’t want them to just be relying on a protocol. I want it to matter to them. You don’t have to make it an hour-long phone call. It could be less than a minute to make that call. Only to say we just wanted to reach out. We really appreciated having the privilege of working with you and Joe and we’re so sorry it went this way and we just want you to know that. And I would just be saying thank you so much for calling, I really appreciate it. Yah, it is hard but I’m grateful for all you tried to do. Period. That’s all.

Rosemarie