We have noticed over the past couple of years that people find our site, www.mmsupport.net using search phrases like, “Dying from Myeloma,” “Final Days of Myeloma” and “What’s It Like To Die From Myeloma?” Not the easiest of topics to discuss, but it is something we should try to cover.
Years ago, back in the dark ages, when MM went undetected for decades, and the patient presented with so many different symptoms, doctors didn’t detect MM until it was far too late. Patients literally died of crumbling bones, high calcium, confusion and coma, or end phase renal failure. Now we know much more about MM:
A. We detect it earlier.
B. We treat it better.
C. We have better drugs available.
However, until a cure for MM is found; the end, whilst it can be put off for a long, long time, is, at the time of writing, inevitable. The natural balance of our bone marrow and blood is tipped against us. Too much protein in our blood upsets our circulation and our kidneys and can leave us prone to other complications like Amyloidosis; excess calcium lost from our bones clogs up our kidneys and can cause cognitive impairment, as well as pathological fractures. The over production of plasma cells in the bone marrow leaves us open to infections, and our immune system deficient.
Few patients die from Multiple Myeloma per se. Most will acquire an infection like pneumonia, or suffer renal failure, or simply fall into a coma from hypercalcaemia – having too much calcium in the bloodstream.
What can happen? This is something we can be fairly certain of. Given that the health of the patient has not been compromised by a drug trial that fails (and this does happen, although rarely), then there are a known number of possibilities.
Ever diminishing levels of the blood’s components can cause a number of difficulties. Without enough platelets, one can hemorrhage. The main function of platelets is to stop bleeding, so without enough of them there can be internal bleeding, nosebleeds and other unstaunched bleeding. Without enough white cells, (there are several types) infection can take over. A shortage of red blood cells, which have a main function of carrying oxygen to vital organs and the brain can cause you to feel fatigued and dizzy. There are lots of good online resources for understanding more about how our blood works.
We know that MM leaves the patient vulnerable to outside infections; these can range from things like Pneumonia, CMV. hospital acquired infections (and whilst not wanting to be alarmist, there is a small chance of an MM patient contracting one of these), random viral and bacterial infections.
Renal failure is also a distinct possibility. MM and connected plasma cell dyschrasias like Amyloidosis, put stress on the kidneys because of an over-production of proteins. The small tubules of the kidneys can become blocked and their efficiency at removing waste severely impaired. This can also adversely impact on joints, where protein deposits are laid down in connective tissue and around cartilage.
Hypercalcaemia. Because Multiple Myeloma interferes with the bone resorption process, too much calcium can be lost from the bones and enter the bloodstream. At its worst this will cause drowsiness, confusion and, ultimately, coma and death.
What can be done? When all drug options have been used, or if the patient is just too weak for any further treatment, hospice and palliative care are the only options. My friend chose to die at home, rather than in the hospice; the local hospice couldn’t have been more helpful and caring.
Whatever was required in terms of hospital equipment, (like a proper hospital bed, wheelchair, bathroom adaptations) was provided without question. A nurse was on call all the times, and made house calls three times a day. The nurse was able to administer pain killers and any other medication required to make the patient comfortable. About a week before my friend died, she went briefly to hospital for an infusion of bisphosphonate (Aredia). This lowered her serum calcium, and meant that for the last few days she was coherent and not comatose. This was important to both her and her family – they were able to enjoy each other’s company up to the end.
What’s it like? Nobody can answer this; but having witnessed the last few days of an MM patient, I can make some assumptions. First of all, there was no pain. There was a sense of peace and calm. First my friend stopped taking even tiny quantities of food and then her kidneys started to fail. Eventually she could not take any fluid, just something to keep the mouth moist. When the end came, I am told she simply went to sleep with her family around her. The end was relatively quick, only about seven days elapsed between the bisphosphonate and the last day.
What else? If the patient has an acute infection, hospital care may be necessary to maintain a quality of life to the end. With something like pneumonia, and this can be deadly, the doctors may decide to simply stop treating the disease. This might be because the drugs have become ineffective, they pneumonia has become refractory (resistant) to treatment; in a case like this, pain medication and oxygen would be administered until the patient is overcome by the disease.
Patients who have acute bone involvement would be given pain medication to make them comfortable, possibly a bisphosphonate infusion to prevent early coma.
Those who have kidney disease would probably be taken off dialysis and allowed to die quietly and pain free.
Spiritual needs: Many patients have very firm spiritual and religious beliefs. Whether the patient is in hospital, hospice or at home, it is not easy to predict when somebody is going to die. Depending on the patient’s beliefs, plans should be made in advance to contact the appropriate clergyman or religious representative. Where the patient requests a “last rites” type of absolution, you would need to discuss fully and frankly with the doctors when this should take place. Other spiritual and religious needs should be discussed in advance with the doctors, hospital or hospice management, or in the case of a home decision, with the appropriate religious and civil representatives.
Finally: In most cases, the actual end phase for the myeloma patient would be calm,
pain free and peaceful. For relatives and caregivers, it is very hard to watch a loved one die, but this is likely what will happen. Some patients may have a quick end (due to a heart attack or something like that), but there is a good possibility that nothing else can be done to improve the health and welfare of the patient by the doctors, and you, the relatives and caregivers will have to watch the last days of your loved one. I can’t make things any easier for you, but I hope I have explained that the patient will most likely pass away with no pain and a sense of calm and peace.
Copyright 2006, Chris Hollyer and Beth Morgan. All rights reserved.